Continued low TSH - Any Advice

Hormones
1

Hi Group,

Following a complete removal of the thyroid gland about 5 years ago, i was put on 100mcg of Levothyroxine for which my body was content with and regualr checks of my tsh were within the normal range. Last year i started to suffer from hot sweats and palpitations/insomnia and as such concluded that i was being overmedicated which was confirmed with a TSH reading trending towards the low side of the nominal range. My dosage was reduced to 75mcg for a period and i knew i had to keep a regualr check on the results. Throughtout this transition to a new dose level, i continued to suffer fatigue and occasional muscle aches but believed i was moving in the right direction with the revised dose. A few months later my TSH level was again seen as too low and outside the normal range so my dose was reduced to 50mcg.

With a general feeling of being tired and unwell i was a patient patient and looked forward to good results and and better physical wellness in the weeks ahead. My latest TSH is again very low (0.03) which would indicate that i need to continue reducing my Levothyroxine dose. What i cant understand is that i do not have a thyroid that provides T3 and T4 and as such need some intake of Throxine to function ? My GP is a little confuse by it all  and even he advised that i stop taking thyroxine altogether !. The latest GP advice is that i remain on 50mcg and make an appointment with an Endo  for further advice in a few months time. My own thoughts are that prehaps my Pituitary gland is malfunctioning and the results are presenting false guidance with the TSH readings or that my body is having difficulty converting the T4 into T3 such that i am not receiving the T3 required to function normally and as such am feeling the side effects of that. Any feedback from those who are aware of similar situation or effects, particulalay from those who have had their thyroid removed woud be much appreciated.

Regards,

Kevin

2

Hi Widdzy, The TSH measurement is only a first approximation. If it is very high then yes you are hypothyridic, however, once you get to the very low levels it is not a very accurate indicator. The problem is that doctors think it is!

My humble, nonmedical opinion is that if you get a doc who will medicate you to TSH then you will be guarenteed undermedicated and suffer hypothyridic symptoms. I say this from the personal experience (I have had a thyroidectomy) from an Endo who almost killed me trying to force this "Lower-the-T4-dose-until-TSH-increases" philosophy.

You have to also measure your T3, this is the energy giving hormone and it is more important to keep track of T3 than anything else.

And yes, you are dead right about the possibility of your Pituitary not secreting much TSH, once the thyroid has been removed the protocol between the hypothalamus, pituitary, thyroid and blood serum is seriously compromised and should not be taken as "gospel". It is a big subject Widdzy, keep reading, researching and fighting! your well being will depend upon it.

3

Oh and one other thing, when you do not have a thyroid T4 is converted into T3 in your peripheral organs, in particular your liver. Do look into conversion (low T3) first as a  possible cause of your feeling unwell. 

4

Hello Widdzy:

My name is Shelly and I am a nurse in the USA.  I have Hashimoto's Thyroid disease.

I am sorry you had a thyroidectomy.  Let me add to what others say here.

These  synthetic's meds like Levo, are assuming you have a Thyroid to convert the drugs into useable T3. Synthetic's don't always convert well in people who do not have a thyroid. There are meds made from a pig's gland that are more like a human's gland and work better some are called NDT's,  Armour Thyroid, Thyroid- S and Thyroid W and a few others.  NHS does not support these meds I am told.  They can be bought online if you are in UK. If you are in USA, ask your Endo about it.

Levo will have to use your Liver, intestines and other organs since your thyroid was removed.  It is harder to get the balance right due to the gland not being there. Take it in slow increments to increase and cut pills up and lower it.  Then stay at a dose for a while and each week increase it a bit.   Take Levo on an empty stomach and you should have TSH level every 2-3 months until stable.

Let us know how you do,  Stay well.

Shelly

 

5

Hi LAH,

Many thanks for your reply - it really is comforting to know there are others out there with experience and knowledge of this complex subject. I feel the GPs are lacking in knowledge and guidance and so i either look for an endo or the forums for help. Interestingly, i found a subject that focussed on Vitamin b12 deficiency and mirrored all f my symptoms. However one in particular i have suffered from during this period of change has been Tinittus in my ears, which i certainly never had as much as i do now. Tiredness, Foggy Thinking, disturbed sleep and hearing loss appear to be tied to B12 deficiency, which is a complex vitamin.

Im currently abroad working and will schedule yet another set of blood tests to see where i am with it all. I know in the UK that the GP's are reluctant to give a full range of tests as they are budget bound and each test has a cost associated with it. I dont mind paying as long as i get the right diagnosis. 

I will insist on a T3 level at next test as i i understand this is what the body needs to function efficiently. I wasnt aware that T3 was an energy giving hormone !

The understanding is increasing, and im glad ive taken this to my own personal level rather than leavin it in the hands of the GP.

Cheers, Kevin

6

Hi Widdzy,  I am in a similar situation as you.  I had half of my thyroid gland removed almost thirty years ago and was immediately put onto a full dose of Oroxine - 100mcg which was to take place of my complete thyroid gland .. putting it to sleep and then living on the oroxine alone for the rest of my life.  So as like you I am relying totally on the tablet to keep me going.  I was fine on this medication.

In 2010 I had a big operation - a hemicolectomy (removal of half of my colon) due to cancer.  All is well with that but because the operation removed part of my bowel it caused my TSH to drop to 0.08.  It had previously been 0.68.  The GP that I saw at the time insisted that my Oroxine be dropped to 75mcg.  Well to cut a long story short - after about six months I was nearly dead.  I had asked the Dr to raise the dose several months before because I was not feeling well and she flatly refused and gave me anti-depressants instead (which I did not take).

Eventually I talked to another doctor who let me put the dose up to half way - ie. 75 one day and 100 the next.  After doing this for a while and still not being ok I put it up to 100 myself.  I have avoided having any blood tests done because I know the GP's only look at the TSH even though my T3 and T4 are fine. However last week a doctor insisted on doing blood tests and now the whole thing has started over again with low TSH and doctor freaking out and not listening to a word I say.  In fact she rang me at home and 'talked at me' not to me for quite a while.  I am very annoyed at the lack of knowledge of gp's and their failure to recognise patient's symptoms or lack of.  I could go on here ...... but I will find another doctor.  I am perfectly well and have no hyper symptoms.  They will kill me in order to keep their paperwork straight by dropping my medication and if I die they will not be held responsible because .. guess what?  I will be 'within the range'.  BTW I am extremely hypo with a TSH of 2.4 - that is what it was when they dropped my meds to 75mcg.

Sorry for the rant .. but now on to you.  People on this forum have given you some very good advice.  It seems that from your symptoms you may be a little over medicated.  But if your dose is to be lowered you need to be very aware of what that lowered dose is and it needs to be done only a little at a time as Shelly advised, until you find a suitable dose.  The doctor I saw recently wanted to drop mine to 75mcg and would not even talk to me about any other dose - I was furious that she had not even listened to my past experience.  In your case how can you possibly live on 50mcg - I am assuming you are an adult.  And to suggest that you stop taking it at all is astounding.  Madness!  You must look out for yourself or these doc's will make you very ill.

7

hi Sketchy,

Many thanks for your informative mail - Yes im an adult - a young 53 year old. What i have always failed to understand is that i survived for about 4 years feeling absolutely fine with very few symptoms and then suddenly a roller coaster of them and for which my GP has been chasing but only with reference to my blood results. I have had no lifestyle change or diet change and there just doesnt seem to be any stability about it all. I am convinced that my low TSH reading is not indicative of the Thyroxine my body needs to function well. I am becoming a believer in manageing the symptoms and side effects rather than the scientific indication of TSH, since up to this point there has been no real proof that the Pituitary gland is functioning as it should. Also i am learning to distinguish between those who still have a thyroid that isnt functioning properly and those who have no thyroid at all ! I found the Vitamin B12 article very interesting and as a side issue to my thyroid probs, am going to look into this some more. The onset of Chronic Tinitus recently has forced me to investigate further and Vit b12 (or lack of) is associated with that, and of course the lack of energy.

Importantly i think for everyone on these forums who are affected like we are, they should take control of their symptoms and not leave the decisions around medication to their GP alone. There are lots of folk who have suffered for too long by just following the numbers.

Regards,

Kevin

8

Hi again Widdzy,  After reading your reply I started to ponder your situation again.  A few things that occurred to me are the following:

   You say you are on Levothyroxine - is that a generic brand?  I am in Australia and have only used the genuine Oroxine brand.  I always refuse the generic Eutrosig if the chemist offers it.  The generics can be unreliable.  So what I am saying is that it is important to always stick to the same brand and is better to pay more for the genuine.  Have you changed brands over the past couple of years?

   Also, have you had any weight loss over the past couple of years - that could perhaps have an effect on the medication dose.  1.6mcg per kilo of bodyweight is the 'general' scale used - this can be tweaked a little to suit individuals.  I weigh 60 kilo and take 100mcg Oroxine.

   The next thing is Anemia which is very common amongst thyroid patients. Especially the Ferritin level.  When the Doc does blood tests ask for the ferritin to be tested.  Anemia can cause fatigue, palpitations, insomnia.  Always get a copy of all blood tests so that you can monitor these things for yourself over time.  When the ferritin test comes back your doc will probably say it is fine - but look at it for yourself and see what your level is because the range is huge.  I have to keep my ferritin above 80 to avoid arthritic type pains.  I have no pains now. I take an iron tablet every three days.   I think the level is higher for men.  I am female btw 68 years of age and in good health - but not according to my doc. who mistakenly thinks I am overmedicated.  I have no hyperthyroid symptoms .. I sleep well and don't overheat and not aggitated unless annoyed by incompetant doctors.  lol

   Another thing to consider - has your thyroid gland started to grow back?  I have read that it can.  You could ask for an ultrasound to be done - it seems a reasonable and sensible thing to ask in your situation.

There is a 'variable daily dosing chart' available on-line somewhere (I have a copy of it) and it comes in very handy for lowering doses over a week.  Saves cutting tablets and helps to change doses gradually.  If you can't find it on-line I might be able to send you a copy somehow.  I wonder if I could attach it to a PM!

I hope things improve for you somehow .. keep in touch ..

   

 

9

Your best seeing endocrinologist I've bee with them since I had a total thyroid ectomy 3 years ago I'm still not right so your best with them GP don't know that much about all the problems my GP's won't do anything to over ride the consultants good luck

10

Hi

I haven't had mine removed ...my mum has.

Seems hypo is also carried forward by genes although I acquired it at 46 in Aug of this yr.

I'm Hypo first reading 7.4......

After starting on a low dose 50mcg and monthly Inrements to 100 mcg in Oct I developed an intolerance to something unknown yet....

Hives( urticaria)... .All over excruciating at times and a tsh of 0.54 in Sep and 1.98 in Oct ...

Each time they've said it's not the Levo

As well as H1 and H2 blockers to reduced acid production Steroids early on......at this point no Immunologist or Endocrinologist........

My friend is a Cealiac and from there diagnosed with Hashimotos as the underlying cause of Hypothyroidism......

She asked me if I was hashing or graves ( hadn't got a clue what she was on about).

She then asked me what my T3 was .....again didn't know .....but now have patient access to all my files .Which anyone can do in the UK so long as you request it.

This hadn't been tested .....

I have pestered the docs literally

Tested T3 came back within range but there is Reverse T 3 which see 's if it's actually being used..( I think)..untested .......I digress

After a chat with my sister who revealed at the grand old age of 42 she is Lactose Intolerant.She screens all labels lol :-).....

My mum doesn't drink it either ......

I'm wondering if this is the cause

I'm a big coffee drinker and semi skimmed kind a gal.......( smoothies ...etc) . ....4 stone heavier than l was 18 months ago and that's depressing but have avoid going down that route pill wise .

Anyway .......went back to the Drs ...we have 4 in our practice again said I don't think it's Dairy ...I also cut out Levo for 3 days ...under Des orders to see if the hives went .....they didn't.......

Funnily enough Levo contains Lactose.mmmm

So I'm off Levi totally till they retest in January....I'm knackered

bloated face is awful ,dry skin back with avengance .....

I gave up smoking 19 months ago feel like starting again.......

Also told me to go dairy free for 2 wks ......good good I didn't know it would be so hard I've done it for 4 days ...I feel deprived lol......

So they're looking for an alternative to the Levi and the majority of meds contain lactose ....Which I believe when you have one intolerance there is probably another ......Wheat I'm guessing although been told not to give that up as will come back negative in tests.......as they're referring now finally to Immunology and Endocrinologist......small victory for persistentance......

So ask for T3 And Reverse T3 to be tested.......

Hope all goes well.......:-)

11

On another note Thyroxine isn't manufactured at all in the UK .......So they are loath to get anything other than the 3 manufacturers they use which are under licence.......

That's why the US have more knowledge regarding the subject and take it a little more seriously as a whole......

You can get other forms but either a private prescription or precsribed named ....

Thyroid UK has a lot of information on they're website which is aptly named Thyroid UK.:-)

12

Stephanie, have you changed brands of thyroxine? They're not all the same! They have different fillers in. I too developed hives, though not as badly as it sounds like you have. I found the brand made by Wockhardt was the most hypoallergenic and had the fewest fillers in (they only make 25mcg tablets, so I took 4 to make the 100mcg dose). The brand I reacted to the most had 'acacia powder' in.

I found I'm intolerant to corn/maize starch which is in all the synthetic thyroxines. Have you tried the oral solution levothyroxine? It's expensive (£125 a bottle) but I was prescribed it on the NHS. I'm looking at the box now. It's got glycerol, sodium methyl parahydroxybenzoate (E219) in it. Unfortunately I swelled up after just one dose. I think it was the glycerol, as it can be from corn.

13

Re dairy free: Porridge made with oat milk is nice. If you are in the UK, morrisons, asda and sainsburys all sell it (in a uht carton)

14

Waiting to see the immunology dept and Endocrinologist...after much nagging and 7 wks of hives .....been of the Levo for a week under drs orders and dairy free for 5 days boy do I miss my cappuccino fix......Still have intermittent hives although not as bad as before ....haven't cut out bread and also staying clear of high histamine foods......

Pharma was one brand can't think of the other but both had the same ingredients....lactose n maize starch.....

T3 was 5.6

Tpo antibodies 188.4. Normal range is 1-9

All other results are mostly at the top end of each reading apart from lymphocytes,white cell count being over and red blood cell distribution .....

I'm at a loss till a proper diagnosis comes through .......

Knackered too boot......

Drs say there no alternative to Levo so I gave them thyroid uk :-)

15

May try it ...I'm in the U K

Have responded to your last post but because of a reference to another British thyroid site it's gone for approval lol......

T3 5.6

Tpo auto antibodies 189.4 . Normal range1-9

16

Stephanie, check out intolerancr to maize (US nsme) / corn (UK name). It's in everything. Another idea is intolerance to soya. Also look up blastocystis hominis - tthere's a really good site by american 'nih'. It's a gut parasite which causes problems digesting foods.

17

Success of sorts finally.......

Referral to endo in January ....ref to immunology March a tad longer than I expected .....

I've been dairy free for 10 days .......I lapse of hives but putting it down to cross contamination.....and now getting g lactose free Levo through my doctor.......feeling relatively pleased but not about the lack of dairy :-)

18

Hi Sketchy,

Did you ever hit the nail on the head when you said, " They will kill me in order to keep their paperwork straight by dropping my medication and if I die they will not be held responsible because .. guess what?  I will be 'within the range'.  "

That is exactly what I think and what I almost lived in reality. My doctor screwed me up so badly on the wrong drug (a bad brand of Levo) at the wrong dose (one which made my numbers look good). It was only when I felt as if I had two weeks to live that I panicked and went to the financial office and said that I was not paying them to kill me! So, money talks (well, at lease my monthly insurance payments) and I got another doctor.

 

19

Finally ....10 days dairy free no hives .....I've also been off the levothyroxine and feel awful ......

Finally referred to Endo ......n h s is busy Jan appt.......immunology March.......I suppose it will work out fine in the end .....

Also getting Lactose free thyroxine through the drs .....he sighed of course and said if you need it you need it :-)

20

Hello Stephanie:

Good news, at least you will be seen. Ask to be put on a wait list in case someone cancels they can move you up and get you an earlier appointment.  Call and talk with the person who makes the appts. for the doctor/clinic.

Gluten Free is available in a lot of stores and they have a lot of products now with no gluten in them.  I know how you feel about the dairy but  hives is much worse. The good thing is dairy items tend to be a cause of weight gain and stopping that will help. 

Yes, I am glad that you can get lactose free Levo.  So keep us posted as this may help another person who may have it also.

Stay well, Happy Holidays.

Shelly