I am going to see my GP tomorrow she wants to see me T4 to high in the blood 30.7 it suppose to be 24.7 that is the range i am under DR S

[howlyn]

he is happy GP not my blood always been in 30 plus but i dont want her to drop me down help

[Hidden]

Hi, If you're happy with that level and so is Dr. S. then go along with that. Jane x

[howlyn in reply to Hidden]

Yes i am very happy so is DR S THANK YOU.

[helvella Administrator Thyroid UK]

You might find some solace and support in this BMJ case report:

A young man was diagnosed with hyperthyroidism 10 years prior to current presentation after a random health screening revealed an elevated free thyroxine (fT4) of 36.9 pmol/L. During that time, he saw multiple physicians and was treated with carbimazole intermittently. His repeat thyroid function tests showed persistently elevated fT4 ranging 25-35.7 pmol/L and non-suppressed thyroid-stimulating hormone (TSH) concentrations of 6.78-22.1 mIU/L. He had a smooth, firm and non-tender goitre. At our institution, laboratory interference was first excluded by serial dilution study (TSH) and retesting of TSH and fT4 on alternate assay, which gave reproducible results. His normal α-subunit and sex hormone binding globulin, partially suppressed TSH by high dose triiodothyronine (T3), and positive TSH response to thyrotropin-releasing hormone stimulation were consistent with resistance to thyroid hormone syndrome. The diagnosis was confirmed by direct sequencing of thyroid hormone receptor-β gene, revealing a heterozygous R320 L mutation that causes reduced T3 affinity and reduced corepressor dissociation.

ncbi.nlm.nih.gov/pubmed/241...

Rod

[howlyn in reply to helvella]

Yes thank you

[maggykriti]

Dr Anthony Toft agrees that some patients do not feel well until their T4 is raised. Also, the test results are based on a 95% range so, whilst 95% of people are within that range 5% will always be outside any range. That is a lot of people! If you take your thyroid hormones before your blood test it givesva false high result. I have had issues with my GPs in the past because my test results were out of range. They agree to treat me with Dr S taking clinical responsibility. I hope you can reassure your GP that your well-being is more important than a test result.

[siannie]

Hi

I had same prob as you. Also under dr s, who gradually increased my meds so I was on double my original dose.

I saw a different go who arranged blood tests and like you I was in the 30's shock horror!!!

He wanted to reduce my meds down to 150 from 200, despite my feeling wonderful for the first time in years !!!!! I discussed this with dr s , as I felt I needed to keep gp on side. We agreed to drop to 150, I take 200 one day then 150 the next..... But dr s recommended to the gp that although I was not at optimal health on 150 should I feel the need he (gp) should increase me to 175 then 200.

I have had a particularly stressful month and knew I was struggling so I've increased to 200 in order for my body to cope. I am due for another test this month to check my levels. I will reduce down again to make my bloods fit his criteria

[howlyn in reply to siannie]

Thank you for your reply us as thyroid patients know our body better than anyone i try to tell the DR if you were taking to much your body would not cope with it falls on deaf ears, as long as the blood test is in range they will leave you unwell, crazy.

[bantam12 in reply to siannie]

Do be careful taking a high dose, you might feel great now but it may catch up with you at some later date and you will know about it !

I was overmedicated for some years ( I wasn't aware at the time) and I became very unwell, it took 18 months to get well again and I am now on half the dose I was taking but I have been left with heart problems and osteopenia.

[siannie]

Thanks hypohen

I think you mentioned this before To me in another link.

I discussed over medicating with dr s but he reassured me that as I had been under treated for so long I needed to be on the dose I'm currently on. Basically I had been running on empty for so long and needed to fill up. Every time I was stressed or exercised I was using the petrol up ... So I needed to get to a full tank first.

I'm being reviewed again by him next year so will certainly discuss the probs of receiving too much thyroxine ... This disease is so awful it's a shame that done of us struggle to get the levels right .

Thanks again x

[bantam12]

Dr S does seem to be keen on high doses, some from another forum have had doubts about their treatment as they have ended up overmedicated.

The logic about filling up the tank is fine but eventually when the tank is full it overflows ! in that scenario all you get is a puddle on the floor, with too much thyroxine it can be a bit more drastic.

Also don't assume you will know when your tank is full as you may well not get any symptoms for quite a while, took about 5 years for me to hit the deck.

[tegz in reply to bantam12]

Is this a time when measurement of Reverse T3 would pressage a pending problem?

The body has mechanisms for off-loading excesses which can be checked in process.

So little practical work is done on what is essentially the mechanics [biophysics] of the body and a few tests at the right time would save so much guesswork.

Priorities are all wrong and mistakes cost us all, incuding the NHS.

[helvella Administrator Thyroid UK in reply to tegz]

Most of the world ignores the other pathways:

In healthy humans the thyroid gland produces predominantly the prohormone T4 together with a small amount of the bioactive hormone T3. Most T3 is produced by enzymatic outer ring deiodination (ORD) of T4 in peripheral tissues. Alternative, inner ring deiodination (IRD) of T4 yields the metabolite rT3, the thyroidal secretion of which is negligible. Normally, about one-third of T4 is converted to T3 and about one-third to rT3. The remainder of T4 is metabolized by different pathways, in particular glucuronidation and sulfation.

thyroidmanager.org/chapter/...

In a body that is not functioning normally, the sulfation and glucoronidation pathways might also be operating differently and could be getting rid of excessive thyroid hormone quite effectively. Or recycling. Or whatever else they do!

Rod

[tegz in reply to helvella]

Interesting & very complex. Obviously a lot IS known already- but in the context of individual reactions in illness becomes far more tricky.

No wonder the average GP is happy to grasp at lab numbers! [But def. NO excuse]

[marditart in reply to bantam12]

Hi hypohen, please can you tell me some of your symptoms from too much tyroxine ? I also have been under Dr S and My Gp never aggrees with his doseage ! I never feel any better these days always tired etc. So would Love to hear your comments plze.

[bantam12 in reply to marditart]

Hi Marditart

I felt really tired, breathless, dizziness and generally very unwell, whilst reducing my dose over many months I was diagnosed with micro vascular angina and now osteopenia. I have recently reduced my dose again as the symptoms were creeping back. I was originally on 150mcg for many years and now take 100mcg, incidentally I have no working thyroid due to surgery and RAI

so the dose I take is all I get, no natural output. We are all different and some need more than others but some of the doses people take are mind boggling. My sister is a hospital pharmacist (and also Hypo), she said she very very rarely dispenses doses over 200mcg and that the affects of very high doses isn't proven to be of any extra benefit.

[marditart in reply to bantam12]

thank you.

[howlyn]

Went to see GP she is not happy with the results of my blood told me of all the risks i face with it being at that level i told her i am well aware of the risk but i would be more at risk if i dropped down high high blood pressure weight gain and everything else that goes with it plus i would feel very unwell. But she said she will leave it alone but not happy.I think with me DR Skinner knows what he is doing i have no problems of over activity i feel great thanks to DR S ill for years before i seen him.

[bantam12 in reply to howlyn]

I do hope you continue to be ok but believe me if heart and bone problems do occur they are usually irreversible, the damage is done. Good luck and stay well.