Diagnosed with hyperthyroidism this morning

Hormones
1

Hello everyone,

I've been feeling so unwell for a few years now .  although my doctor is very kind , he was not worried about my thyroid as he tested me over two years ago and it was normal

i went to see a dermatologist a few weeks ago .... who said unexpectedly  .. I think I'm going to ask your Doctor to test your thyroid ... and hey presto ... positive result this morning

in a way I'm glad as I thought I was going insane .    

but Im scared to death about the treatment....

my symptoms are :-

excessive sweating ...to the point where I am exhausted after them

they go on all day and several during the night too.

muscle pain

tremor in my hands and  (head) 

aching joints

dry itchy skin all over

constipation

swollen feet and ankles

dry hair and peeling nails

hair falling out

unable to sleep.... there are more but I hate to boast ! ha

My Dr told me my thyroid was 309 this morning and I'm 

worried sick ... it seems excessive to me as I'm told about 5 or 6 is 'normal'   ...is this true

he says I have antibodies that are causing my immune system to attack my thyroid ... I just do not understand it all

can anyone help me with advice please

i have to make up my mind whether to have radio iodine or chembizole ?    

please help ...

regards

 

2

My TSH has been 0.17, then 0.16, then 0.50 then 0.047 .

Jean

3

Hello,

I myself had Graves disease (hyperthyroid) and went with the radioactive iodine treatment.

I don't really have a suggestion as to which you should go with, the  radio iodine or the chembizole. I never had anit-thyroid meds like chembizole so I don't know the effects it has on the body and the % of it working for some patients. When my Endo doc sat me down and explained it to me, he told me there is only a certian % chance of the anti-thyroid meds actually working, on top of the risk of it causing damage to the liver, etc. Also that if the anti-thyroid meds don't work, you'll be back to the choice of radio active iodine or surgery to take out the thyroid. I don't know how true that is, this is what he told me.

He also told me that if I went with the radio active iodine route or surgery, that the meds for hypothyroid wouldn't have as many side effects compared to the anti-thyroid meds. Believing him, I went with the choice of Radio active iodine in Oct 10th or last year.

So far becoming hypothyroid had been a bumpy road. My endo first placed me on generic levothyroxine, which I read isn't the best compared to others like Sythyroid. When I was on generic Levothyroxine, I felt like complete trash. I kept having chest pain and discomfort on and off and eventually it got very very bad that I had to go to the ER. I kept telling my Endo's nurse that I've been feeling very bad with the chest pains, as well as my knees hurting all the time and she pretty much ignored me saying it was something else causing the problem. I felt so stuck. I started researching myself, reading around, and asking questions on forums like this one, and found many answers to why I was having these problems.

Problems with the chest pains, came from the dosage of the Levothyroxine the doctor first put me on. Everybody's body is different, and some can not start off with a high dose of Levothyroxine. I was one of them. The moment I cut my Levothyroxine pill in half, the chest pain went away almost immediately. I try to explain this to the doctor and his nurse but they still were giving me a hard time at addressing other issues caused by either the Levothyroxine or hypothryoid itself.

I decided to switch to a Holistic doctor, in which she placed me on Armour thryoid meds (desiccated thyroid hormones) and have felt much better. I no longer felt like complete trash compared to the generic Levothyroxine. I did still have some problems like joint pain still, lack of energy, bad heartburn and some tooth loss, but apparently that was also the fault of my doctors.They never did any blood work on my mineral panel, and the whole time I've been hypothyroid for months, my body had developed extremely low vitamin D and iron. In fixing both the vitamin D and iron I feel a whole lot better. I don't have joint pain anymore and my energy has picked up, no more heartburn and don't seem to be having tooth loss anymore.

I still don't feel at my 100% like I did before the hyperthyroid happen, but it seems to be slowly working it's way up there.

Anyways, long story short, that's what I've expereniced thru going the route of getting radio active iodine. If you do choose to go that route, just make sure you stay on top of everything. All the bloodwork you need to include a full mineral panel,b-12, folate, magnesium, potassium, calcium, sodium, glucose,iron, vitamin D, Thyroid antirbodies,TSH, Free T4and T3, and Reverse T3,adrenal testing, etc. If you're feeling certain

symptoms that you haven't felt before you started becoming hypothyroid, do alot of research first and ask around, cause most likely  it's something caused by the medictions you're placed on, hypothryoid itself, or problems caused by hypothroid. I myself couldn't not rely 100%on my doctors to know what to check for or change to slove my problems, even tho you think you can trust them to know what they're doing cause they're specialists. No, you must keep on top of things yourself.

So again, I can not suggest to go one way or the other. Do a lot of research, read, ask around on forums like this, before making a choice. Either route you go, just keep on top of everything. If things don't feel like their working then you make have to go another route, try a different med, etc.

4

Dear Mage

Thank you so much for this invaluable information. Your history is an almost replica of my own especially with regard to chest pains, throbbing knees plus I have peripheral neuropathy. I also have heartburn but have reflux and due to a history of Deep vein Thrombosis and Pulmonary emboli caused by HRT I am at  the end of my tether to know what to do next or even how to get through the day.

Most of my medical problems have been attributed to the side effects of medication yet still nothing is done about it. Not of yet anyway.

Opinions on TSH levels vary so much that that in itself is a cause of much stress and 'confision'.

I agree entirely with everything you have written and admire you for your tenacity and ability to keep your head above water despite the mess created by this thyroid disorder.

With very best wishes and kindest regards

Jean

 

5

Dear Madge

I meant to say that I am on life long warfarin due to a history of dvt and pulmonary emboli caused by HRT/

Kind regards

Jean x

6

Hi Jean,

l have  read what you've written very carefully, this is all very new to me 

and your information, I'm hoping will help with my decision.

I don't seem to be able to comprehend ... how...  if I am producing too

much thyroxine ...   why they would destroy my thyroid ...  why not 

medicate if they need to.... to bring it down to an acceptable level.

I must admit I was terrified when he told me my thyroid reading was 309

... that's enough to scare most folks I would think.

I wish you well Jean with the next chapter in your treatment

Today I feel as though the top of my head is about to come off , 

i am so nervous and anxious....  NOT my usual state of mind or body at all...  very frightening !

I have decided , much as I have a wonderful doctor, I will make a 

private appt. with an endocrinologist ..for next week to get a 

second opinion... and hopefully , not such frightening treatments

as the 2 options ive been given..

Thank you for your kind words

and the very best of Luck🌹

 

7

Hi Madge

I am exactly the same. The signs and symptoms are indescribable and frightening. However seek solace that others have or are still going through a very similar process. When all this started I thought that I was having a mental breakdown albeit I have never had one. The anxiety, depression, sweating, anorexia, feeling unsafe were overwhelming.

I  had never ever felt this before in my life.

It wasn't until April 27 2015 that a multinodular goitre was found as an incidental finding on a CTPA scan done to eclude a pulmonary embolism. It took until June 30 when I saw an endocrine surgeon privately and had a scan to discover that I have twenty nodules on the thyroid. No treatment has yet been started. Neither have I had a biopsy.

Meanwhile the signs and symptoms persist and at the moment feel as bad as they were 18 months ago.

If it wasn't for this Forum and the support I would have ended up in a mental institution I think,

I am waiting a decision now as to whether I can commence radioactive iodinee for hyperthyrooidism However the signs and symptoms fluctuate bewteen hypo and hyper. I feel dumbfounded.

Kind regards

Jean x

 

8

Dear Madge

If you private e mail ne I can send you my landline number or ring you.

My laptop is pplaying up with a longstanding problem of not being able to Private message.

Kind regards

Jean

9

Hello Madge:

My name is Shelly and I am an RN (Nurse) and I live in the USA.  I have Hashimoto's thyroid disease since 1987, it is a form of Hypothyriodism.

When you have antibodies that are destroying your thyroid gland, you have what they call an autoimmune disease. A doctor named Hashimoto discovered the disease and they call it Hashimoto's Disease or Hashi's for short 

This can be a family trait or it can be from the Epstein-Barr virus also called MONO. Ask family members if they had any thyroid disease.  It hits wome more than men.

Back to Hashimoto's,  for some unknown reason it thinks your own thyroid gland is a foreign body and it attacks it.  It takes many years for this disease to progress in the body. It is slow and many of people can be misdiagnosed for years because symptoms don't all appear at once or could be explained as stress.  Sadly, many doctors also do not order blood work at all, so you can have a problem and be missed.

Many times in the early stages of Hyperthyroidism or Hashi's , people swing back and forth between Hyper and Hypothyroidism.  Your lab work (Blood work) will change a bit from time to time. 

Hyperthyroid can show symptoms of excessive sweating, feeling HOT, rapid loss of weight, muscle aches, hard time falling asleep,  tremors, nervousness, and many more.  these are common ones.  Hypothyroidism can show, dry skin, weight gain, feeling COLD, muscle aches, loss of menstrual cycle, hair falls out, etc...many more these are most common ones.

You will need to decide if you want to use a radio iodine chembiizole. I would say no to that because it can damage other organs.  What they can do is remove a part (lobe), of the thyroid gland and it can function on the other lobe normally. That has worked for some.  You can decide for yourself.   I also knew a lady who had Hyperthyroidism and she did nothing and lived with it.  It all depends on how severe it is for you.

I am sorry you have thyroid disease, but at least you now know. You have a good and smart Dermatologist.

Make sure to get a copy of all of your lab work done.  In case you see another doctor and they did not send your file along.  Also a good idea is to keep a log of your symptoms and show that to your doctor's in the future. Always seek a second opinion if you can either with NHS or with a private doctor.  I hope this helps. Any questions just ask.  Be well, Shelly

10

Shelly, how kind if you to contact me...

I am a little shell shocked at the moment with my bad news yesterday and spent much of the night sitting in the kitchen with my head on the table feeling miserable and unable to sleep and in pain 

Your letter is better than anything I have read on the Internet, obviously you absorbed all of what you were taught as an RN

I live in Scotland and we are extremely lucky here to have a great 

health service but I also think you have more time and feel listened to if you go privately for a Consultant appt. at a private Hospital, so I made an appt. and will see someone soon.

The thing That I or my doctor found hard to believe was that when I presentedb to him , my symptoms were HYPOTHYROID SYMPTOMS,

that was only a few days ago.... real exhaustion , hair falling out dry itchy skin all over, aching joints and painful muscles, sleeplessness 

BUT ...  I definately have  severe hot flushes, feeling very warm, tremors in hands and head, feeling very nervous and anxious 

I don't know what on earth it all means ...but I'm deciding by the minute  that I don't want chembizole and I don't want Radio Iodine either ...

I understand exactly what you said about your Thyroid gland seemingly, becoming a foreign body and your immune system attacking it .. my Doctor explained that is exactly what's happening to me therefore 

at the moment the surgery sounds like a better option to me ...

Incidently, my two sisters have thyroid ...HYPO ...  they each have a daughter who has it .... my cousin and her daughter has it , I'm positive my Mother had it but was never diagnosed.

I must also say that I never really knew what they went through with it,

I was very young and didn't understand the condition at all, I don't 

think anyone unaffected by thyroid trouble 'gets it ' though.

I hope seeing the Consultant enables me to find out just WHAT TYPE of thyroid trouble I have as it would be madness to accept a treatment for 

HYPER when  I might be HYPO ...  or HASHI .... or indeed any other.

thank you so much for your kind words and your valued advice

Shelly... and I hope you  condition is stable and that you are able to enjoy your life to the full....

 

11

Hello Madge

Your description of how you feel is very similar to myself.

I feel just the same as yourself.

Albeit I know that no one can ever feel the same as another,

Shelley is very accurate in what she writes.

I also have panic attacks which are a feature of a thyroid disorder.

These are very distressing.

Kind regards

Jean

12

I'm so sorry Jean....... you seem to have many bad symptoms,

I am not an aggressive person but I have no intentions of being  "fobbed off" by doctors who granted,  have more than their own share of work,  and I hope I have the courage to tell the Consultant when I see him that my knowledge of thyroid disorders may be limited ... but I have learned more 

from this site, than I have learned from my own doctor.

Therefore I want to know EXACTLY which type I have, so that I know my enemy and will be forearmed in my pursuit to good health.

I have been so bad with this THYROID PROBLEM    ... that I very

seriously thought my life  was over, now I aim to gain the knowledge I

need .... to cope with ...   or eradicate it .

Please, in your most dignified way, tell them how desperate you 

feel  and ask them for their help...

13

Thanks for your reply Madge.

I know how hard it is to cope with these signs and symptoms.

I feel that my life is over so I guess that that is 'just' another sign/symptom of this horrid thyroid disorder.

Tell me Madge are you taking any painkillers? If so which one(s). Codeine can cause severe depression plus can increase pain levels as it stops the body's natural painkillers and anti depressant endorphins being produced by the body/brain.

Codeine can also induce chronic migraine as can paracetamol.

Above info given to me by a neurologist who specialisies in migraine and analgesic induced migraines/headaches.

Also caffeine can cause headaches. I was advised by him to avoid codeine, caffeine, stress!! and to exercise.

Exercise of course stimulates the production of endorphins.

Caffeine can cause headaches. However sudden withdrawal of caffeine can also cause a headache. This neurologist told me that one only has to take 3 to 4 tabletss of codeine each WEEK to suffer codeine toxicity.

I hope this message is passed by the moderator as it may be deemed to be irrelevant however I feel that because of your pain, plus the way you are feeling that it is very important to look at your medication and to note the side effects if applicable.

Have you had your thyroid antibodies checked Madge?

If not they need to be done as well as other immunology testing, that is my opinion anyway.

The private specialist will probably request TDH, T£, T4, Thyroid antibody screening, Reverse T3, FBC, U'es and Es's, inflammatory markers, EBV screening.

kind regards

Jean.

14

I have had my antibodies checked  Dr. said the antibodies are attacking my thyroid gland ..  hence the problems..

he told me thyroid reading was   309  !!    can't believe it  !

that's why I'm going to see consultant ..  for a second  opinion .

I DO NOT take painkillers ... very occasionally I take 2 paracetamol 

not that it makes any difference !

Im aware of the damage painkillers can do ... especially to your 

bowel...  it can stop it moving entirely  ... even just 1   ....  frightening !

thanks for trying to help Jean ..l I'm sure you have enough trouble with 

your health without taking time to advise me !

 

15

as for that list of tests  to have done ... OMG !   it might as well be written in 

Chinese  !     as I don't have a clue what all that means !!

Oh I have so much to look forward to ...   NOT !

However I will note these tests you mention and ask my Consultant what

on Earth they mean   ... Thank you so much Jean ...🌹

16

Hi Shelly,

being a nurse would you happen to know if having a couple of steroid

injections for arthritis in my hand and foot would make the thyroid 

worse or increase it ..

 

17

Hello Again Madge:

I am so sorry that you have thyroid trouble.  I know first hand HOW if feels.

You can live a good life with the disease, and as soon as your body settles down.  This disease is a bit sneaky as some of the symptoms can be missed or show up in increments of time.  Also some people have most or all the symptoms and some of us have just a few symptoms.

Sadly, thyroid disease tends to run in families and that is good to know your relatives have it. It is in your DNA. My aunt had it and My older sister and I have it.

Pass that information along to every doctor  you see!  It is important to know. Also tends to hit women 20-40 years old and also later in life in some women.  Some ideas on why this happens is a "trigger" like having a baby, pregnancy is hard on the body and triggers it. 

It does not hurt to get a 2nd opinion.  Doctors's go to medical school and then they go into a specialty area.  GP's are to know the various systems but tend to have limited knowledge about glandular issues.  However, some GP's can and do read and have a good handle on thyroid issues. So it depends on the doctor, and asking people who you know well, may help in finding a good one.

Hashi's is a slow disease.  When I first noticed symptoms was at puberty.  I hated COLD weather, and felt cold all the time.  I had other symptoms but I thought it was just a weird thing with me.  I was finally diagnosed in my mid 20's.  Back then nobody tested young women, and they do today!  They know more now.

It is so common to be Hyper at one point and then Hypo later or vice versa.  Thank God for the antibody test, and it helps diagnose you much better. You are not alone, and you can make lemonade out of lemons!

I am 54, still kicking and pretty stable now. LOL.  Thank you for your kind words, I want to help where I can. It does not matter what country we are in, we are humans, and we needs the support and comfort & knowledge of others.  If you have any questions or need to vent your thoughts you can PM me or ask here on this forum. XO Shelly

18

Hello Madge:

I also have received steriods for Arthritis.  No it will not bother thyroid disease but it can raise your blood sugar levels.  If you have Diabetes, it should be monitored. If you have Diabetes, it would keep the blood sugar higher for about 3 days.

The local injection of a steriod into a joint like the knees, it tends to be in the synovial fluid in that joint. It can be there for 4-6 weeks.

Some other meds like Epilepsy medications can be a problem with thyroid meds. Also some COLD meds can cause problems if taken for an extended period or longer than 4 days. 

When you are on replacement thyroid you need to take that an hour before meals as food can cause it to bind and not work.  certain pain-killers can be a problem, such as Vicoden, Percocet, Codiene.  If you are on these ask your doctor.  Tylenol or paraacetomol is okay. 

I hope this helps. XO Shelly

19

Shelly,

this is all going into my notes to take with me for Consultant Appt.

..l thank you so much for your advice ... especially since you have 

a medical background ....  so much more appreciated  !

you seem to have sorted yourself out ..  and I am glad .. it's 

always easier to deal with a problem  when you are well informed 

and i'm trying to get some knowledge before I speak to endocrinologist

as I really am a novice in this department !

thank you and 

best wishes from Bonnie Scotland 🌹

 

20

Oh and ....   I'm a bit of a coward when it comes to taking

pills ......  I DONT TAKE PAINKILLERS

i have tried them in the past after surgery and felt awful with 

side effects.

Occassionally  I might take a couple of Paracetamol if I'm really

feeling pain  .. that's it !    not that they're much help !

Madge