Losing the will!

Hormones
1

I was diagnosed with Hashimotos back in December last year, that was after years of feeling ill and being told that thyroid levels were borderline with no action to be taken. It was only because my sister (who was diagnosed with the same thing 2 years previous) told me to request an antibody test that i was finally diagnosed (antibodies were off the scale). I have been on 100 mcg Levothyroxine since the diagnosis and although after a couple of months i started to feel a bit better, i still haven't managed to shake of the extreme fatigue and aching joints. The last bloods my GP did showed that TSH had gone right down but T4 keeps rising. The GP said this indicates going into Hyperthyroidism however i'm certainly feeling no effects of 'hyper' whatsoever.

Last week i ended up having to have 4 days off work, i was completely wiped out and had been having discomfort in my stomach for a couple of weeks. A new GP did all kinds of tests (B12, Vit D, Liver, Lupus tests etc) however when i called the receptionist for the results yesterday, she said they are all normal!

I've always been so active and i really can't get to grips what's going on in my own body and getting to a point that i don't want to be around people because i don't want them thinking 'she must be an hypochondriac, she's always ill'!

Someone please tell me i'm not alone!! :o(

2

I have similar story to yourself. I had years of borderline underactive, the doctor said I would one day have to go onto Thyroxine. I have never been heavier than 9.5 at that time, so not the obvious sign of Underactive, for the Thyroid Hormones. I had times when I was so lethargic I had thought I was about to go down with flu, but I got used to these occasions and realised it was something other than flu. I had no other symptoms of flu. I had very dry skin around my eyebrows, my toungue felt too big for my mouth and sore around the edges. I was given  blood test paperwork, again by the doctor, and decided to use it next time I am feeling really rough. I did and I got the diagnoses Hashimoto. My sister had been Overactive with a goitre some years previously with an operation to remove the goitre. I read up a lot during this time on the Thyroid, and realised before my diagnoses that I probably did have this problem. I used to have 75mg but I have over the years had this decreased. I am now only on 25mg as I recently had a blood test and had a phone call from the surgery to take this lower dose.

i used to phone the surgery and speak to the receptionist, and yes she would say normal. But I realised it is best to visit the doctor

himself/herself to get the full story. You know what is normal, if you are'nt  happy with how you feel, go to see him. I am 66 next month, I do not know, allow my doctor to tell me I am feeling well. I have asthma also and Ryhinitis. I have never smoked thank goodness, so my lungs not too bad. Are you in the UK. I also take and Iron tablet every couple of weeks, as a woman I used to take iron tablets, more regularly when younger. I invested in a Oximetre to test how hard my heart is working, this I find helpful to test the hormone I am being given. I also find after taking that one Iron Tab (Ferus Sulphate form of Iron tab) couple of days my heart is better at rest than before I took it. I also ask receptionist to give me a printout of the blood test so that I can compare them, each time I have a blood test.

regards Maureen

 

3

Lou

Also you are NOT a hypochondriac.

You are 'always ill' as you wrote because you are iill and not been adequately treated. I hope that your surgery will send you a copy of your blood reports. I find it is always handy to keep everything on file should it be needed.

Jean

4

You sound very much like me, except I have never been very active, just always tired.  I am 66 years old and when I was young they didn't have a TSH test, or probably not other thyroid tests either.  Doctors would diagnose and treat according to symptoms, but my doctors never seemed to think my symptoms warrented treatment.

When I was finally tested, it was with TSH and I was found to be normal.  I was tested every year for about 10 years with no change.  Then I was found to be hyperthyroid when I was 60 and antibody tests confirmed I had Graves' Disease.  They had also tested for Hashimoto's Thyroiditis which was also positive, but they didn't tell me that.  When I visited my third Endocrinologist at age 64, she told me she would test me for HT, and she ran the same tests that I had before showing both types of antibodies.  At that time I was stable with my thyroid after being taken off Anti-Thyroid Drugs, but I tested low with FT3 and felt like I needed something to address that.  The Endo said "You are very close to borderline hyperthyroid [per TSH] and if I gave you the smallest possible dose of a thyroid supplement it would probably be too much for you."

I took my woes to my PCP, an integrative physician, and he agreed I should be treated.  I was given a choice and I was prepared with an understanding of what each kind of supplement was.  I chose Cytomel because I knew it was fast acting and fast leaving the system.  I felt like I was walking a tightrope between the hyper and hypo, and I was the only one who could really walk it. I reasoned that if the smallest dose could swing me either way, I wanted the Cytomel so it would not be too much for too long. When I took the first half-tablet I could tell it was too much and learned to cut it in eighths instead, gradually building up the dose.  My TSH actually rose closer to mid-range on the Cytomel alone, but when I added a small amount of Levothyroxine, I became hyperthyroid again and had to see another Endo.  He took me off everything.  I was miserable.  No energy.

My PCP suggested I take Wellbutrin.  Depression symptoms are very similar to those for either hypo or hyper-thyroid.  I had tried other anti-depressants with no good response, but the doctor said this kind was different and would address the particular symptoms I was having.  It changed my life back again.  I am no longer cold, nor sluggish, nor foggy in the head.  

My TSH is normal, although it may be partially due to taking Acetyl-L-Carnitine as well.  It has not affected me as much as the Wellbutrin, but it seems to add a little boost to my muscle strength and energy.

5

Thank you all for your replies. Its good to know I'm not alone. I just never know from one day to the next what symptom I'm going to have. At the moment it is just fatigue, achy knees and elbows and sores in my mouth,

6

Oooops pressed enter too soon........

and stomach discomfort, but others I get regularly are swollen gland in right of neck, headache, dry skin and hair, nausea and brain fog.

I live in the UK and my surgery have just changed the way they operate. I tried to get an appointment for this week to discuss my results... the soonest I can see someone is 2 June! I turn 40 in a few weeks but I feel more like 90!!! Sorry for moaning, but I will take your advice on board 😊

7

Hello Lou,  I am a Nurse and live in the USA. Back in the 1980's when I got diagnosed, it sure would have been nice to have this forum then.  Hashimoto's can cause the gland to be useless.  In some of us, taking LEVO, is not an option.

I was unable to take T4 and convert it to T3. All I ever got from Levo was loose bowels, cramps and headaches.  I must have tried it for 1 year.  I ended up going through a bunch of the thyroid meds until I found Cytomel.  (Liothyroxinne).  It has onlly T3, but I can feel as normal as I can.  I used to be so sleepy, unable to hardly move, weight gain etc...

try a different thyroid med, sometimes the body does not adjust to a higher dose of the med, and in some people the med stops being effective.   We are all different and the body can't always take the most popular med.  I know they like LEVO in your country but your body may not be happy with it.

Can you try another thryoid med?  Ask and see if they will switch you. I hope this helps.

8

Thanks for that Shelly, will mention it when I next see my GP

9

Hi Lou, I have had Hashimoto's for over 20 years. I was not discovered to have it for over 15 years and suffered horrendously, to the point my young children had to go live with their father my ex-husband.

Hashimoto's as you know, is an auto-immune disease. It has periods of being hypo then can swing into hyper. Being on 100mcgs of thyroxine is the usual standard dose.  You may not feel the 'standard' hyper symptoms as not everyone does. I feel very hyper when I am in fact hypo!

You say the TSH has gone 'right down' what number are you quoting? You see when TSH is originally (for example) 2.4 and then is say, 0.01 that is hyperthyroid not hypo. It is the opposite of what you think it should mean. It means the pituitary gland is shutting down the release of the TSH. The higher the T4 number, the more thyroxine is being ingested (in your case) so this will tell you the dose is too high.

If your TSH is say, 1.2 and the T4 say, 26 then you are ok. T4 might be a bit high but that is ok, because the TSH is within normal range.

Having explained all that, part of the other problem is that Hashimoto's has a bad habit of making us feel totally lousy regardless of the medication! If your antibodies are high THEY will be what your body is reacting to, not the thyroxine levels. The antibodies affect the brain as well, and can make a person feel totally whacked!

Eventually you may end up needing surgery to remove your thryoid as Hashimoto's basically attacks the thyroid and renders it unable to perform its job. This might take years or it may happen sooner, everyone is different.

I had my thyroid removed in 2007 and it does take many years for the antibodies to dissipate. Generally they can take up to 3 to 5 years.

For me personally I have had a heck of a time since surgery getting my thyroid levels right, but I am an exception to the rule. I am however a thyroid advocate and encourage you to learn as much as you can about your disease. Do be aware that you may well be low on Vit D regardless of them saying 'normal' Normal can be low normal meaning just on the edge of the normal range, and for us Hashi's we need a higher number not the lower end. Get a copy of your pathology tests and have a look and see for yourself what it says. If you like post them here with the reference ranges and I can have a look and see. (You have the legal right to ask for them.)

Hashimoto's is a doozy for sure, and you are NOT alone!

Any other help, feel free to ask!

10

Hi there, the last results i got, my TSH was 0.02 and T4 had gone from 11 to 19. They didn't check my TPO last time though and that was the test that initially flagged everything up. I think that was >600. I'm due to go back to see my GP on 2nd June (after a 2 week wait!!), so i'll make sure i get a print out of all test results.

I've felt that bad recently, i'm even thinking of trying a gluten free diet to see if that will help.....i'm willing to try anything!!

Thanks for the advice

11

Good to hear you are seeing the doctor soon.

I personally would strongly advise not to change medication at this point. Shelley mentions having issues whilst on Levo, but I suspect it was the dose which was too high, rather than the actual medication. Correlation is not causality.

Your TPO being so high is pretty obviously showing the Hashimoto's The numbers being high have nothing to do with how serious it is. Some people react horribly at much lower numbers and some wouldn't even know they had it at 5,000. It is a highly individual symptomatic thing. However, you have it and that is proof of it.

Your levels of TSH etc rising show the medication is working, but if the Free T4 starts to creep up to the dose may need to be slightly lowered. Remember it takes up to 6 weeks to see ANY result so be patient. You may find you go up and down like a yo yo for years till the thyroid karks it. Sad but true.

Don't forget to request any lab reports and keep them for your future reference. It is highly important to keep notes of what dose you felt your best at.

Going gluten free may make you feel a bit better to cope with thyroid issues, but it won't stop the progression of a thyroid disorder. However having said that, many people are gluten sensitive when having Hashimoto's.

Cheers

12

Hello Redwoodgirl:

I am an RN, (Nurse) and live in the USA. 

I know when I was first diagnosed with Hashimoto's back in 1987 "Levo" (Syhthroid) was given to me and I took the starting dose and then it was up slowly but I never saw my T3 or T4 levels be proper.

My TSH was always low and both T3 & T4 also   All I ever got was severe loose bowels, (I had a battle to keep fluids in me), really bad headaches, and cramps. I was so sleepy and was not having my periods for  a while.

I never even got as high as 100mcg dose!!!   So it was not a high dose that was giving me any trouble.  I was years later diagnosed with a mal-absorption problem with the receptor sites for LEVO, almost like an allergic reaction.  i was very ill from it.

After about a year of this and my blood work not coming back right, my doctor switched me to another med called Thyrolar.  Levels also did not come up.  This went on for a long while until I got onto Armour and my level was much better. Then Armour (NDH), USA pharmacies hardly could get it. So my doctor got me on T3 Liothyroxine and no T4.  I am able to function and my TSH level has been normal ever since.  I am on 5 mcg but it works on me. I have very little T4 in me, and I am tested about every 3-6 months.

So in short, some of us, can't take LEVO as we can't convert the T4 into T3.  I learned this the hard way. There are others out there also.

From now on please do not assume that I was on a high dose and that is why I had trouble.  Unless you are a doctor or a nurse or have this problem you may not know about it. 

Thanks,

Shelly

 

13

Ah, good to know that your case was not due to high dose Levo, however you must not imply to others not to take their medication.What was disasterous for you may not imply it is in other people's cases. It is always valuable to know of others and their stories.

Yes, I studied to be a doctor but alas was the old hyperemesis gravidarum which pulled the plug on further studies. I have had severe medical issues for over 20 years, now. CYP2D6 enzyme deficiency, true anaphylaxis to opiates, Hashimotos, several cancers and I ought to be pushing up diasies instead. LOL! So I do have intense medical knowledge.

I have also been to US several times and had to deal with the ignorance of doctors there with my thyroid meds too. ( Not much different anywhere in the world it would seem ,here in Australia I fear it is much worse though) I have many US friends and am on many forums helping people with their issues, too.

Armour unfortunately will not work for everyone and as I pointed out in another post, can be dangerous for those without a true T3 conversion, however in your personal case, I am very pleased to see it does work for you.

I personally have not been able to get my levels right on any dose of T4 (hyper on low dose and hypo on high dose, go figure) and T3 put me in ER several times with cardiac arrythmias. Pooey for me, hey!

Synthroid is very similar to our Eutroxsig here in Australia and unfortunately that is the only medication we have. Eutroxsig is T4 only and synthetic. Works for most but not all.

I am sorry you took offense but I had not seen anything to imply that you were not on a high dose. Hyperthyroid by excessive dosing can lead to diahorrea and many new patients are unaware of that problem, it was not intended to insult you but rather point out the dangers in high dosages. Just like I can not take a medication to relieve nausea, or antidepressants, due to my enzyme defiiciency, some of us are medical oddities, and I hope we can respect that.

Cheers.

 

14

Hello Redwoodgirl

Read your post with interest. I have got multinodular goitre which was found as an incidental finding on ctpa scan very recently

I am waiting to see an endocrine surgeon and a physician. I have the signs and symptoms of hypo. However bloodwork shows a TSH of 0.17, T4 ws 16.5 and the thyrooid peroxidase antibodies was less than 33.

I am always cold, have the heaing on night and day I have dsevere depression and anxiety since being taken acutely ill in December 2013 with severe haadaches, throbbing pain in the right eye. loss of appetite, de motivation, feeling disconnected from the world, heaviness of both legs, spasms, cramps. I have a severe vit D deficiency disorder and also epilepsy. I have long qt and a history of blood clots and am ife long warfarin and a cardicor .

I expect that I will have ti have a ultra sound scan of the thyroid plus biopsies. All this is adding to the depression.

 For two days I have felt worse except for the headachhes which lasted from December 2013 to the end of May 2015. 

I am feeling churnned up as I need support and feel alone with all this at the moment. perhaps I will feel better after I see the specialist tomorrow.

Kind regards

Jean.

15

Hey Jean,

 You poor thing. Isn't being a thyroid patient the pits?

You do know that the 'book' for symptoms of hyper or hypo needs to be rewritten. Having a TSH of yours and your low T4 can mean you can be feeling lousy with depression and the cold intolerance. Normally a TSH of yours would be seen as hyper but your low T4 shows you are not.

You say you have a Vit D deficiency disorder, is that low Vit D, or do you have parathyroid issues going on? Low calcium can lead to low Vit D. Our intestines are actually where our bodies absorb Vit D in our diet, and without calcium our intestines can not absorb it at all. Have you been tested for parathyroid hormones and calcium (it needs to be corrected calcium not just total calcium, this will be stated on your pathology results)

I don't know if you take any thyroid medications but just as an aside, and for others who read this, make sure you take ANY medication, vitamins etc at least 4 hours AFTER taking your thyroid medication. It can interfere and cause problems.

Feeling medically unwell can lead to depression, believe me I know, but the fear of worrying something is wrong will make it feel worse than ever. Each day is a new day and one we need to be thankful we actually got up out of bed! I do hope your specialist is sympathetic to you tomorrow.

Know you aren't alone and you have my support. Having 'been there, done that, bought the t-shirt (it's in the wash right now!)' I can empathise greatly with you.

Cheers from Oz.

16

Hello - your reply to me is in moderated so you must have said something sassy or mentioned a website.  What ever it was please state your credentials as I noticed you like to diagnose people without stating who you are????.  Are you in the medical field?  It can happen that a person can't take T4 and convert it. 

Like I said I was on a low dose of LEVO and never could handle it in my body. Believe me, I wish I could take it as I pay $12.00 for a 30 day supply of Cytomel (Liothyroxine) and Levo is only $4.00 for a 30 day  supply. 

I hope you can be civil. 

Thanks,

Shelly

 

17

Hi Shelly

I wrote to you before about my bloodworks. My TSH was 0.17, T4 was 16.5 TPOA were less than 33. I have been advised that this suggests sub clinical hyperthyroidism. Most of my signs and symptoms are hypo. I Aalso have a multinodular goitre. I feel sick with worry.

Jean x

18

Hello Jean: 

Your TSH is low and that  plus your symptoms you have described indicate  HYPOTHYROID more.  The words sub clinical mean ( not enough of symptoms) and it does not really matter.  As I remember you have no thyroid meds yet and you do have a heart issue Q T segment and also Phenytoin meds for another problem.  You are seeing the endo surgeon soon on June 12.  We will know much more then.

Many of us have a mutinodular goiiter and  like I said, they may have to remove it if it is causing you problems with swallowing, eating, or is giving pain off.    Hashimoto's is an autoimmune disease and your antibodies in your body attack the gland.  It takes years for it to complete, and causes low thyroid or HYPO Thyroidism.

It comes with nasty symptoms like mental confusion, tiredness, feeling achy, headaches, muscle aches, weight gain. Believe me this condition is yucky.  However, we have it and must live with it.  Hashimoto's is treatable but not cure-able.

Don't worry - we live in the best of times and modern medicine can fix this problem.  They have meds for it.  They will get this sorted out for you.

19

Thanks Shelly

My t4 is 16.5 T3 not yet been done. What does the T4 mean?

Why did an endo say that the low TSH suggests hyperthyroidism I don't get it.

Jean x

20

Hello Jean, Happy Sunday. 

Our thyroid gland  has lobes and makes 2 very important horomones. T3 is called Triiodothyronine  (say that 5 times quick, LOL), and T4 is Thyroxine.  The gland takes T4 and makes it turn into T3.  In some people the nodules ruin the gland and cause pain, so they take it out.

I have had Hashimoto's since I was 27.  However, I had many symptoms when I was 12.  I had constipation, tiredness, and feeling cold.  Back in the 1970's  my GP back then, never tested me.  They did not know enough to do so.  I complained of being cold.  I lived on laxatives since I could go 4 days without a bowel movement. i was only 12.  Nobody thought this was weird???

I grew up without a Mother and my Father was not medical and had no idea what was wrong with me.  Since I was young, they just thought it was a temporary problem.  I also caught Epstein-Barr virus  back then called MONO.  I went years without knowing I was ill.  When I went to college my professor in Nursing school, noticed a goiter.  She said I had one!!!  She was spot on, but who knew back then.  I was not getting my period, and the other symptoms were still with me.  If I did get my period it was heavy.

Later on, I got a wonderful GP,(who I am still with),  and he immediately called the lab and ordered TSH, T 3 & T 4 and other blood work.  I was started on T4 - Levothyroxine brand is synthroid.  However it did not work on me!!!

My doctor changed the med after a period of time and that one was T4 called Thyrolar, also did not make my level come up!!!  i was so shocked as I took it everyday.  Jean I so sick from it,  I had headaches and muscle pain, and loose bowels and it was almost like having "food poisoning" with cramps etc.... my dose was only .0.25mcg.  I never got up to 100 mcg. 

It was later discoverd that Hashimoto's had destroyed my thyroid gland and rendered it useless.  I aslo have nodules,  so I can't take LEVO as my body will not convert the T4 into T3.

TSH is (Thyroid Stimulating Horomone) and  it measures both T3 & T4 in your blood AS AN OVERALL NUMBER.  Most people need T3 & T4 levels measured to see if they are doing their job.

The words in your case are:  sub-clinical mean not enough symptoms so what they said was not enough to be hyperthyroidism.  I  think it is a fancy way of saying you have Hypothyroidism.  you may have Hashimoto's and that is why I try and help, as I do not want YOU to suffer like I did.

Believe me, I would not wish this on anyone!!! It is a real pain!  However we live in modern times and have wonderful meds to help.  We must make Lemonade from Lemons!  We need to support each other and help one another regardless of whatever country we live in. So many of us have it. Back when I was young, I knew nobody who had it.

I hope I can help you.  i feel so much empathy for people who have this.

XO Shelly