How often should gp test tsh when hypothroid. - Thyroid UK

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How often should gp test tsh when hypothroid.

Janee profile image
15 Replies

Husband has been hypothyroid for at least 18 years and has been getting steadily more tired over the last six. Has now had to retire early because of this. Went to endo last year and had a raft of tests but nothing abnormal showed up as far as he was concerned. Since being discharged from Endo GP has not tested tsh for over six months, how often should he be checked. He has seen the GP several times over the last six months and had a trial of Metazapine, which had no affect at all. GP said nothing more he can do, see how you go. Getting more tired all the time but no one seems bothered. Feel a bit abandoned.

15 Replies
PinkNinja profile image
PinkNinja

Thyroid should normally be tested every 6 months to 1 year, however the TSH test is pretty much useless once you have hypothyroidism because the feedback mechanism is broken. There has been recent research on this. They should really test T4 as well (as T3 but you'll be extremely lucky if you can get them to do this!)

Do you have his most recent test results? If not, please ask for them with the reference ranges (they vary from lab to lab).

Although his TSH might be in the normal range, most people are only healthy once their TSH is below 1 or, in some cases, suppressed. T4 needs to be near the top of the range or, in some cases, above the top of the range provided T3 is in the normal range and no hyper symptoms are experienced.

Please get hold of your husband's test results and post them here. You could also post all his other recent tests too. There may be something significant there that your doctor doesn't realise is important.

It is important that his serum iron is well up in the range and that his ferritin (stored iron) is above 70-120 depending on reference range (it's only 70 for women). This value for ferritin is much higher than the bottom of the normal NHS range but NHS ranges are notoriously low for many things. Iron is very important for your body to use thyroid hormones.

Other important tests to consider are folate and vitamin B12. B12 should be above 400-500 for optimal health but the NHS range starts at around a mere 200!

Vitamin D is also important. It would be a good idea to get this checked. The NHS ranges appear to be quite good for this.

I hope this is a start for you. It does sound like he might need an increase in his thyroxine and he may have other issues as well. If none of the above helps, please let us know as there are other things you could consider too. The above are the most likely (actually, needing a higher dose of thyroxine is the most likely) but there are other possibilities too.

I hope your husband finds the solution so he can feel better. Please let us know how he gets on.

Carolyn x

tegz profile image
tegz in reply to PinkNinja

Interesting what you say about Iron for men. I understood this was best below 80 as Haemochromatosis [nhs.uk/conditions/Haemochro...]

is always a risk.[Most common undiagnosed genetic disease in europe]. Mine is 70 and I was pleased with that- but you sound totally sure that 120 is OK. I'm searching for a holistic balance in my hormones as I've tried and failed to cope with high BP on one recent course [not thyroid] and worry that even if I get Synthroid [TSH 4.8] eventually I will have trouble due to Adrenal/hypothalmus issues[head injury].

I have an unanswered ? still waiting for inspired response on this.

PinkNinja profile image
PinkNinja in reply to tegz

I was talking about ferritin, to be clear, but you could be right. If I have made a mistake I do apologise. I will check now.

If you are feeling well with a ferritin level of 80, you are probably fine.

PinkNinja profile image
PinkNinja in reply to tegz

It depends on the reference ranges. The reference range for my lab goes up really high. The optimum range of 20-80 doesn't apply here. In fact anything below 80 is likely to be on the low side, regardless of sex.

As it depends on reference range, I will modify my answer to "70-120 depending on reference range" to be on the safe side.

I can't remember where I read that 120 is a good level to be at for men and I can't find it again :/ Looks like that's a job for this morning!

If your reference range is much lower, then I would agree with you that anything over 80 would not be a good place to be. It seems that in the UK reference ranges typically go well above 200.

It seems that many people recommend higher ferritin levels for hypothyroid patients than those with healthy thyroids. Again, I can't remember the rationale for this.

I will see if I can find your unanswered question. I've not been around much the last couple of weeks but I will see what I can do. It may be that I can't answer it though...

PinkNinja profile image
PinkNinja in reply to tegz

I have done some reading around. I found various recommended ranges for ferritin yet the most common are around 70-90 regardless of gender. Some recommend higher levels for men but some don't. It does seem to be interesting that these higher levels are recommended for hypothyroid patients by some people but lower levels seem to be acceptable for "healthy" patients.

There has been research to show that levels below 50 can cause problems even in the absence of anaemia, and that iron supplementation can resolve the problems. "Healthy" individuals were used in this study, as opposed to hypothyroid patients.

I will use the 70-90 range for both men and women in the future as this seems to be the most quoted range for both genders.

tegz profile image
tegz in reply to PinkNinja

It's quite possible that Iron is more needed by HypoT people, and fine -so long as they are not genetically liable to HaemoC.

I think the number for this is about 1/1000, so not 'common' as such -but a commonly 'undiagnosed' illness, like UAT.

The figures a quickly clocked earlier was that readings of >1000 ug/l ferritin were of consequence but I think too, this can still be masked- like in UAT/Hashi's/Low TPOAntibodies.

When the body goes wonky -it don't play ball, does it?

I wish medics would realise this more!

tegz profile image
tegz in reply to tegz

PS: Ref range my test 30-300

Janee profile image
Janee in reply to PinkNinja

Hi Carolyn,

Just looking at all my husbands results, Can't find ferritin, is it called something else on blood test forms.

His last TSH was done in October 2012. GP just gives results not reference range:TSH 0.96. Tests done by Endo gives ranges - Free T3 was last done August 2012 and was 3.9 (ref range 3.1-6.8), not done with TSH. and a FreeT4 test May 2012 which was 12.1 (range 9.99-31.4) with a TSH done at the same time of 0.16 (range .47-4.68)

His Vit D was low at 73.5 but had some supplements from GP and on Aug.2012 went up to 121.7, not tested since and not on supplements from GP now just a very low dose from chemists. Too many other tests to recount, most other notable one was positive antinuclear antibodies greater than 1:640 suggesting SLE (Lupus) but all other tests did not confirm. Don't think he has ever been tested for B12.

One other thing that always puzzles us is his blood pressure and pulse are always low. He is 63 and although used to enjoy exercise he has never been super fit, and certainly not now, but pulse is always below 60 at resting and blood pressure is usually between 90/50 and 100/70. When we mention this to GP's they just say it's fine. Any comments would be appreciated. Jane

PinkNinja profile image
PinkNinja in reply to Janee

Ferritin should be called "serum ferritin" or something similar. It sounds like it wasn't done. It might be worth asking if they can do a serum iron and a ferritin test to see if he needs iron.

It does look very much like he has some form of autoimmune disease. It could be SLE lupus. It can take a long time to get "text book" results.

His T3 and T4 are too low, even though his TSH is pretty good. This could be why his pulse and blood pressure are low. I had the same problem with pulse until I got my thyroid medication sorted out. My pulse would sometimes be as low as 36! It is now around 60 although I am pretty fit.

Another possible reason for low pulse and blood pressure is low cortisol levels. This can also make TSH look really nice and low even when thyroid hormones are low in range. It would be advisable to get T4 to the top of the range and T3 to the upper half of the range. You might be interested in Dr Toft's book "Understanding Thyroid Disorders" where he explains about this. YOu could then show your doctor :)

Regarding the low cortisol, see if you can get adrenal/cortisol tests on the NHS first to rule out anything like Addison's disease (another autoimmune disease) but if these are "normal", it might be worth doing a saliva cortisol test.

If the adrenals are capable of functioning, they can recover with self help measures. You might want to have a search on the internet for "adrenal fatigue". Drs Rind and Wilson have pretty informative websites.

I hope that helps a little and doesn't confuse things too much!

Carolyn x

Janee profile image
Janee in reply to PinkNinja

Thanks, all useful stuff. He did have his cortisol tested with the short synacthen test which came back 'normal'. He has had two private adrenal stress profile tests, the first one in October 2011 and came back Resistance Stage 1, the second one in May 2012 which came back Adrenal Fatigue. Told GP who dismissed private tests and said cortisol test was normal so nothing he could do. Will have a look at Dr.Toft's book, don't hold out much hope though as GP's don't seem interested unless they can give you a pill to sort you out. I can send you the last profile if your interested. Jane

Janee profile image
Janee

Thanks, will sort out his last results and let you know. Endo did advise gp to keep tsh in low range but gp does only test tsh.

Marz profile image
Marz

...this sounds like another case of not caring for the patient adequately. I suggest Janee you read as much as you can on this forum and go with your husband armed with detailed notes and interview the GP. I can't help thinking that so many GP's are unable to seek knowledge from others when they do not know something themselves. GP's cannot be expected to know everything in detail. Why don't they just say - sorry - don't know much about thyroid. but will find someone who does. Sorry is a word that seems to have left the English Language. I do think your GP should take some responsibility for your husband having to retire early.

I sometimes wish I still lived in the UK so I could go around to surgeries - just like those Medical Reps !! - and bash a few heads against the wall.

Sorry - early morning frustration ! Do wish you both the best of luck and I'm sure your hubby realises he is in good hands with your watchful eye !

Making drastic cuts in Lab testing - eg not testing FT3 and Anti-bodies is a HUGELY false economy - as it will eventually cost the NHS far more with all the subsequent conditions caused by under-treated or undiagnosed thyroid issues......diabetes, heart disease/.failure, memory/cognitive illnesses and so on.

Had I remained in the UK I know that I would have remained undiagnosed as all TFT's have remained within range. It was only the high anti-bodies and nodes on a scan done here in Crete that pointed the way to Hashimotos. That would have meant the last 8 years would have been spent sleeping and in chronic pain ! I was also happy to retire at 57 as I was truly exhausted....

Apologies for this lengthy rant !

tegz profile image
tegz in reply to Marz

Good to hear a positive approach in Greek medicine pays off.

It's a disgrace that the UK uses such low response [ie: TSH >3 isOK!] tactics to cover up lack of care generally -and pass the buck to patients and PCT hassles with GPs.

I hope the lid will blow off the whole issue before long- something needs to be done as too many legislators and medics are asleep at the wheel.

Marz profile image
Marz in reply to tegz

.. I agree !

Jackie profile image
Jackie

Hi, When ever he starts to feel "off" he should have an extra test, quite likely to suddenly need to be on T4 ( levo) and T3, only the tests will show this,Or just an increase in levo. Also the other tests too,annually for those Thyroid disease can get worse with age, the key is how he feels. Always ask for a print out ( receptionist) for all tests + ranges ( differ). This is not Data protection but his blood! Also when having tests, always ask what is being tested, it is legally compulsory to tell the patient ,if asked.

If GP difficult about testing. do them on line as so important but make sure you use a reputable, well known Lab if it is to alter treatment.

Best wishes,

Jackie

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