TSH of 150 but feel fine! without meds

[smilas]

I was diagnosed with hypothyroidism in July following a very serious motorbike accident where I cracked my head open and nearly died. I've since recovered with fractures to my skull which are all healing now.My questions are below if you can please offer me some advice as I'm not getting help from anywhere.

My TSH level is 150

Free T3: 1,87p/mol

Free T4: 2,23p/mol

But I feel fine. It has been this way since July, and at first I felt very tired and very emotional, and had an enlarged goiter. I'm inclined to think these symptoms could very much be due to the accident and post trauma too. I was told to take levothyroxine but they made me feel worse so I stopped. Changed my diet, lifestyle, have been practicing lots of yoga and relaxation exercises and in the last week the goiter has shrunk and I feel really good. No tiredness, no weight gain, full of energy. I have a slightly fast heart rate at times, but again through breathing exercise I tend to slow this down. I'm feeling very good but my TSH is still showing 150 as of 9th Novemebr and so I'm wondering what I should do. I can't get any advice from GP's, they won't give me the time to discuss or hear my questions. The only thing different I've notice today is a thick white phlegm with a couple of brown spots in it and a strange taste in my mouth.

I am inclined to believe that seeing as the goiter has shrunk it can only mean the thyroid gland is balancing out? Or am I wrong. I'm basing things on how I feel in myself rather than what I'm being told and I need to know if I'm right in doing that or if I'm putting myself at risk somehow despite feeling better than I've felt in 8 months, without medication.

I was also told recently that with a TSH the high I'm at risk of heart failure or slipping into a coma suddenly, but why would the doctors send me home if that was the case? It's all very confusing and scary so I really would like some help to understand what is going on.

I've also had an ultra sound done on my thyroid and everything was normal.

Like I said, I'm a yoga instructor and have always listened to my body to determine my state of health, and I'm doing this now. I feel great. But my bloods say something different and doctors can't believe how I'm still able to function at all.

Any advice would be so appreciated. I've been in a state of confusion for so many months now, and every way I turn I'm just told to go away and take the meds.

Thanking you in advance

[Clutter]

Welcome to the forum, Smilas.

Do you have the lab reference ranges for FT4 and FT3 (the figures in brackets after the results)? If FT4 and FT3 are within range that will explain why you don't feel hypothyroid.

TSH doesn't cause any symptoms. TSH responds to circulating T4 and T3 levels and is usually high when FT4 and FT3 are low. It is low FT4 and FT3 which make one feel hypothyroid. If FT4 and FT3 are normal it is possible your pituitary gland or hypothalmus was damaged when you had the head injury and that is why TSH is high. Your GP should do a pituitary function test to rule out pituitary dysfunction or refer you to endocrinology.

[smilas in reply to Clutter]

hi and thank you for responding. My FT3 and FT4 results are in my post- they are apparently low but I still don't feel much. A little muscle ache in my legs walking up a flight of stairs and like I said a goiter but that has shrunk since last test..

I've been trying to look into the pit function but doctors say there's no point as only reason it's high is because of thyroid.

[Clutter in reply to smilas]

Smilas,

But are FT3 and FT4 within range?

dailymail.co.uk/health/arti...

patient.co.uk/doctor/http:/...

[smilas in reply to Clutter]

doctors say they are low but not ridiculously low...everyone says something different to be honest

[Clutter in reply to smilas]

Smilas,

Ask your GP receptionist or practice manager for the ranges. 'Low but not ridiculously low' is a rubbish comment.

[elizabethanera in reply to smilas]

Hi, poor you. So confusing for you.it sounds like you really went through an awful lot. You are fighting back though. Go easy on yourself. we will all be wishing you well.hope symptoms continue to improve. ,Or you get some answers.

[smilas in reply to elizabethanera]

Thank you, that means a lot x

[Clutter]

Hillwoman,

TSH 150 flogging the thyroid gland might cause a goitre. Smilas hasn't included thyroid antibody results so there is nothing to suggest autoimmune thyroid disease (Hashimoto's).

[Hillwoman in reply to Clutter]

So sorry, you're quite right, I misread the TSH result. Blame it on a disturbed night.

smilas , please ignore what I said - I'm not as well as I thought I was today!

Actually, I'm deleting my comment, because it makes no sense.

[elizabethanera in reply to Hillwoman]

Oh bless you, just seen your other post. Take it easy.

[elizabethanera in reply to Hillwoman]

Hi, hope you bit better today. It my turn today.😥😑☺

[elizabethanera]

Hi, glad you slowly recovering. Have you considered that the shock and trauma of the accident may have thrown your immune system off kilter? Maybe you need bloods done. Taste in mouth ,is it salty, or like aluminium? Don't ignore it , we have all done that at some point and maybe years later all the symptoms suddenly appear altogether and knock you for six! Trauma ,shock etc can cause autoimmunity. Take care. ☺

[smilas in reply to elizabethanera]

Hey, thanks for responding. I lost my sense of smell and taste and hearing in my right ear, which are all starting to come back and there is now a taste and smell but I can't quite describe it. not metal I don't think. .

what might that suggest?

[smilas in reply to smilas]

It's almost a sweet taste..The only things i can really taste are sour sweet and salt when i eat too but apart from that there is a constant smell and taste which are the same, almost like essential oil or something? doctors just ignore me when I ask if it could signify anything

[smilas in reply to elizabethanera]

One more thing! I actually feel that when I massage the goiter or sing (yoga therapy for the thyroid..) the taste increases, it's like it comes from the thyroid?

[puncturedbicycle]

Did they send you home w a levo script? They will only (99%) give you levo, that's how they treat uat. If you have a sky-high tsh that is the treatment. If you refuse to take it they won't section you or detain you in hospital, there isn't really anything else they will do so they hold their hands up and you go home w your tsh at 150 and they warn you of the dangers.

One thought - a head injury can damage the pituitary. Have they looked at that? Or did they test your antibodies? If they did not test for antibodies or if your antibody tests are negative, I suggest you go back to the gp and say you understand why you've been given the levo but you'd like to be 100% sure there isn't more to it than that and ask to be referred to a specialist.

You might want to have a look online and/or ask on the pituitary gland forum.

pituitary.org.uk/news/mecfs...

hormone.org/diseases-and-co...

[eeng]

Clutter is right!

[SilverAvocado]

I agree with Eeng and Clutter! Just to confirm, in case you hadn't realised: TSH is Thyroid Stimulating Hormone. It's produced by your pituitary to tell your thyroid to get going. The pituitary does this when it makes a judgement that there isn't enough circulating thyroxine.

Any part of this system can break down. It seems more likely your pituitary is out of whack and creating TSH at the wrong time. But unfortunately GPs know very little about thyroids, and the fact that there can be more complex problems.

So you may need to do some digging yourself, and definitely push to see an endocrinologist. If you repost the FreeT4 and FreeT3 with ranges we can tell you if your thyroid hormones are doing okay.

150 is an extremely high result. You rarely see anything that high in people who haven't had their thyroid removed. And if it was a decent representation of your thyroid situation you'd be in bed most of the day, and not able to do things like yoga. It should be obvious to the doctor you don't feel like that.

[smilas in reply to SilverAvocado]

I'm definitely not in bed all day! been out and about in London all day today after a 2 hour yoga practice! I'll post antibody results, they did send me home with levo, but they made me feel worse so stopped taking them after 4 days. By "ranges" you mean normal ranges? FT3 & 4 are apparently low but not ridiculously low- the docs are just giving me levo based on TSH

[humanbean in reply to smilas]

You need to know the ranges for your results. There is a big difference in interpretation of the following results for an imaginary test I just made up :

6 nmol/L (8 - 16)

6 nmol/L (6 - 16)

6 nmol/L (1 - 11)

6 nmol/L ( (1 - 5)

In each case, the reference range for my imaginary test is different. Taking them in order, the first result is under the range, the second is bottom of the range, the third is mid-range and the fourth is top of the range. Each of these results has different ramifications for a person's health and how they might be affected and how they might improve their health.

A number by itself tells you nothing you can rely on.

Free T3: 1,87p/mol

Free T4: 2,23p/mol

For the above test results we need reference ranges in order to make sense of them.

[SilverAvocado in reply to smilas]

Yes, the ranges should be in brackets after your own tested number. Every lab is different, so we can't tell how low they are without it.

Everyone here is more interested in your FreeT3 than the TSH, because that actually tells us whether your thyroid is working properly. TSH being high doesn't necessarily mean that (although your GP will probably assume it does).

[SilverAvocado in reply to smilas]

Smilas, when you tried Levo did it make you feel hot in temperature, restless, high pulse rate, those kinds of things like your body was speeded up? If so that would mean you don't need thyroid replacement and you'll get overdosed by trying it.

The other option is feeling more tired and rotten. That could just be the result of a small dose of Levo that isn't enough to improve things, just enough to confuse your thyroid.

4 days isn't really enough to know anything. 6 weeks is the ideal time to try out a dose of Levo. It's a pretty slow acting medicine. But as you're not feeling ill at the moment you probably don't want to invest loads of time seeing how much worse you can make yourself with different dosages

[smilas in reply to SilverAvocado]

felt restless, speeded up heart rate and felt sock every time I ate

I have heard iit takes time to adjust- that was on 25mg of levo, but you're right- seeing as I'm feeling better than I have since the accident in march I'm reluctant to make myself feel worse taking meds that might not be right? And the fact that my goiter is smaller than it was when first diagnosed, I think that's a sign it's re balancing? OR could it be it's shouting down?

confused..

[SilverAvocado in reply to smilas]

Actually now I hear you say that, sometimes people have a response like that if they're struggling to tolerate a dose even if they need it. 25mcg is such a small dose, probably enough to confuse your body, but not enough to really change anything.

[smilas in reply to SilverAvocado]

I definitely felt more restless, panicky almost, sick/nauseous..

I recently had my bloods done again and below are the results which I think show that things are improving??

I've grouped the results in

test name/ value/units/reference range

Previous Results 21 Dec 2016

T3 / 37 / ngdl / 60-200

T4 / 1.4 / mg/dl / 4.5-12

TSH / ^150 / mIU / 0.30-5.5

FT3 / 1.15 /pgml / 1.7-4.2

FT4 / 0.37 /ngdl / 0.70-1.80

Latest Results 31 March 2017

T3 / 58 / ngdl / 60-200

T4 / 2.1 / mcdl / 4.5-1.2

TSH / 102.40 / mIUml / 0.30-5.5

FT3 / 1.8 / pgml / 1.7-4.2

FT4 / 0.34 / ngdl / 0.7-1.8

Why confuses me is the difference different doctors have as reference ranges because these results were taken in India and their ref ranges are totally different from doctors in the UK so how can test results be accurate?

I'm feeling fine, despite being told I shouldn't be able to walk or even function with these lab results...all very confusing but your take on the TSH/ FT3 importance to suggest hypothyroidism resonates with me. GP's really use one reference to suggest and diagnose when there are so many other factors to take into consideration and I strong;y believe my results are the results of my head trauma vs an actual thyroid malfunction..

But any of your advice or theory would be appreciated based on these latest results

Thank you

[SilverAvocado in reply to smilas]

Let me see. Having seen the reference ranges, it's clear that all your thyroid hormones are low. So it isn't just the TSH (pituitary messenger) that is out of whack. The freeT3 and freeT4 are the actual hormone used by your body to regulate your metabolism.

Have these numbers changed without taking any medication? Yes, they do look quite a bit better than they were in December. Although they are still quite bad and you'd expect to feel very ill with these.

But everyone is different, and symptoms are really the most important thing. If you don't feel sick, then you probably don't need to do anything. Although do be careful, as fatigue symptoms can creep up on you. An accident is also one of the common ways for hypothyroidism to begin, so it might be that once things settle down you will need some treatment.

[Tamzin27]

Hi,

Re: the taste and phlegm, did you have anaesthetic at any point after the accident? Or are you on any medication that could be causing the strange taste & mucous?

Tamzin27

[helvella in reply to Tamzin27]

Questioning other medications is certainly right.

[smilas in reply to Tamzin27]

i had anaesthetic for an operation they had to perform on my ear- a myringotomy

[smilas in reply to smilas]

But that was also back in March- apart from that I went on a course of Chinese medicine for 12 weeks to try rebalanced the thyroid but stopped that in September

[smilas in reply to Tamzin27]

i also lost my sense of taste, smell and hearing following the accident but as of two months ago have this weird taste..don't know if that helps

[Tamzin27 in reply to smilas]

Anaesthetic gave me heavy phlegm and a strange taste in my mouth. That's why I was asking if you had anaesthetic. Mine was only for a few days after the anaesthetic. Well, it looks like you have been through a lot and the Chinese medicine could also be the culprit. Hope you feel back to normal soon.

[smilas in reply to Tamzin27]

Hey Tamzin- I was anaesthetised to have myringotomy operation on my ear due to internal bleeding but that was in March 2016

I seem to just have one taste and smell, and have been told it's imaginary and due to neutrons re knitting/ re forming?

[helvella]

If your TSH is 150, but your thyroid hormone levels not so very low, I suggest the possibility of two prongs:

A thyroid which cannot respond adequately to the high TSH.

PLUS

A pituitary that is pushing out too much TSH.

My thoughts are that if your thyroid were capable of responding adequately you would have high thyroid hormone levels. But your pituitary seems to be doing far too much for only slightly low levels.

Better not forget the possibility of TRH levels also being high - possibly due to head injury.

One of our members is particularly involved with these issues -

headinjuryhypo

Hope she is around to respond. Anyway, her website is here:

headinjuryhypo.org.uk/

[smilas in reply to helvella]

Thank you- do you know what the thyroxine levels should be? what are TRH levels?

[helvella in reply to smilas]

TRH is produced in your hypothalamus (and elsewhere). TRH levels are rarely looked at all.

The TSH output of the pituitary is controlled by the amount of TRH it receives, and the amount of thyroid hormone it receives in the bloodstream.

I do not know what the range is for your tests. I was taking the comments as indicating that the FT4/thyroxine level isn't extremely low.

[smilas in reply to helvella]

Thank you Helvella

Are you able to offer any guidance on these latest test results?

I've grouped the results in

test name / value / units / reference range

Previous Results 21 Dec 2016

T3 / 37 / ngdl / 60-200

T4 / 1.4 / mg/dl / 4.5-12

TSH / ^150 / mIU / 0.30-5.5

FT3 / 1.15 /pgml / 1.7-4.2

FT4 / 0.37 /ngdl / 0.70-1.80

Latest Results 31 March 2017

T3 / 58 / ngdl / 60-200

T4 / 2.1 / mcdl / 4.5-1.2

TSH / 102.40 / mIUml / 0.30-5.5

FT3 / 1.8 / pgml / 1.7-4.2

FT4 / 0.34 / ngdl / 0.7-1.8

[helvella in reply to smilas]

The FT3 range is rather odd - a more typical range would be 3.0 to 7.0 pg/mL.

I'd want to be absolutely sure that the TSH result is not being affected by, say, TSH antibodies.

But every figure says HYPOTHYROID. Even if you allow for pituitary issues and ignore TSH (whether high or low) the results say HYPOTHYROID.

As others have said, your case is complicated and needs very gentle, thoughtful consideration and treatment. Your T3 (free and total) is now just about nudging the bottoms of the ranges which looks a bit better.

I suggest you write new post - and refer to this one. Old posts only get seen briefly, as a rule, even when new responses are made.

[Bettan]

Hi smilas, About ten years ago my gp found by chance that my TSH were 149 but my ft4 and ft3 were a bit like yours. I had no symptoms ...yoga one hour every morning...jogging 2x week etc. Because of my high TSH I was given Levaxine which almost killed me. Needless to say I stopped taking the tablets after a week and refused to take any more. After a couple of months I was persuaded to try Liothyronine (t3) which agreed with me and I am still taking them but I never found out why my TSH shot up like that. Take great care with any kind of head injury because there may be some small internal injury which has been missed before you start any medication. Insist on seeing a specialist. Good Luck!

[smilas in reply to Bettan]

Hey, thanks for writing - have your tsh levels normalised now?

[Bettan in reply to smilas]

Yes my TSH is now 0,33 mu/L .

[sweetpotatoe]

I was so happy to read your experience. I’ve been on levothyroxine since 2012 12.5mg then 50mg then 75mg I suddenly felt a goitre developing I was putting on weight and feeling sluggish my normal saliva in my mouth non existent and my nose was constantly dry. I’ve been taking ibuprofen everyday for reuccuring headaches. So I’ve gone cold turkey stopped the levothyroxine over a month ago at the same time I started a new job as a chef in a busy commercial kitchen doing 10 hour shifts walking my dog and still feeling ok!!!

I went to my dr to tell her what I’d done she ordered a blood test and it shows my TSH as 53.1 ...

I should add during this time I’ve added Zinc and Selinium and Brown Seaweed to my list of supplements (B Complex Vitamin C and B6

I wake between 6.30am and 7am no problem sleep well thru the night feel the best I’ve been in over 10 years eat a balanced diet fish, some dairy NO carbohydrates which I think were a lot of my issues and make my own sour dough bread eat more fermented foods too. I don’t understand why my T4 is showing low and TSH high yet I feel fsbulous ...