After a long and tedious battle lasting the best part of 5 years with my NHS GP to get a hypo diagnosis and another battle lasting monthsto get a dose increases I thought I was making progress until my last set of blood results where I find myself slipping back to square one.
I managed to fight my corner (sort of) enough to hold off a dose decrease of 25mcg (which would take me back to 100mcg), but since my last post my GP has sought the "advice" of an Endo who (rather predictably) has said he will only acknowledge the TSH and T4 results the T3 is irrelevant (seriously?!) and my dose should be decreased to raise my TSH (never mind my symptoms) because Im at risk of brittle bones (the least of my problems right now) and so GP has (after my protest) decided 100mcg/125mcg on alternative days and see me again in 6 months (who needs NICE guidelines right?). I'm done with this. What are my realistic options now?
My plan was to suck up the decrease and do a Medichecks Ultravit test in 8 weeks, but (assuming my TSH increases and T4 and T3 drop due to lower dose) the best I can hope for would be to be put back on 125mcg daily and be no better than I am now, but I am not sure this is my best option. It looks as though I have a conversion issue so what would be my best course of action? Should I perhaps be seeking to get a private T3 script? How do I go about this and where would I buy the T3?
NOVEMBER 25TH 2019 (Levo increased to 125mcg)
TSH X 4.49 mIU/L (Range: 0.27 - 4.2)
Free T3 4.88 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine X 10.700 pmol/L (Range: 12 - 22)
LATEST RESULTS - JANUARY 2020
TSH X 0.115 mIU/L (Range: 0.27 - 4.2)
Free T3 4.9 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 18.300 pmol/L (Range: 12 - 22)
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ILR2019
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Is there any chance the GP will refer you to an endo, rather than just "discuss" your TSH and T3 results in absentia? If so, it has to be worth getting the list of T3-friendly endo's from Dionne at Thyroid UK. Even if you don't need T3, you definitely need an endo who (a) will actually see you and (b) understands something about thyroids!
Remember you can see any consultant in the country - it doesn't have to be at the local hospital (although obviously it needs to be somewhere convenient to you).
Also have you had the full blood tests done as recommended on this forum - eg thyroid antibodies, folate, ferritin, Vit D and B12? - you really need all of these to understand what is going on, and to show an endo. Finally, are you having an early blood test, on an empty stomach, and with a 24-hour gap from taking levo? If not, your blood results will not be "true"
Thank you for the reply. I take my bloods religously as per the recommendations from you kind folks here. My current GP has, to this point be understanding and I was quite lucky she would listen (prior GPs were useless) however the suppressed TSH and threat of brittle bones seems to have put the stoppers on listening to me any further.
I asked today and she said there is no need to be referred given she is acting on the endo's advice. Sadly I live in a small village and GPs job share between the nearest surgery and the one Im registeted so I can't change surgeries. I guess Im going to have to seek a functional doc.
I lost my thyroid 3yrs ago I was suffering with bone/joint pains that would make you cry my Endo did DEXA Scan it showed mild osteopenia and SHE FREAKED OUT started messing with my meds my bone pains/joints got worse with med reduction then before I had DEXA Scan. I finally got access to my health record online and 10yrs prior to my thyroidectomy I had DEXA Scan those results said mild osteopenia the result were not much different from new results.
My 80yr old mother just had DEXA Scan her results are simular to mine she has mild osteopenia (genetics)!
Don't do DEXA Scan (unless you have family history of osteoporosis) because any diagnoises of bone loss mild or not they will rip your meds from you.
My last B12 (serum) was 224 ng/L (prior test 230 ng/L). The lower lab range is 190. GP has flat out denied the figure is an issue (my B12 has been consistently somewhere between 200-300 since at least 2013 which is as far back as I can access). My Vit D is 66. Ferritin 66 ug/l. Folate not tested. This is why I was thinking of doing the thyroid ultimate vit test.
After stalling the GP for a few weeks she has made her mind up that I must have this reduction due to that bloody TSH (thanks to endo advice. Had she not sought his advice she was happy to stall the reduction until next test). I just don't know what to do for the best now and really need guidance 😔. Im also angry (and greatful) I have to come here for advice a medic is unable to give.
The NHS guidelines is that they always go by the TSH even though it is a pituitary hormone not a thyroid hormone. There is nothing we can do to change this I'm afraid and that is why I do my own private blood tests and buy my own NDT because the NHS will not budge unless your TSH is 10. They have to follow guidelines and I think they like to see us suffer.
No, I had no prescription and I had to source my own and do my own private blood tests because my GP refused to give me Levothyroxine. I knew I could get Levothyroxine online but a kind lady on another site told me her supplier of NDT in Thailand. This was over 2 years ago and I purchased a 1000 grains (tablets) for £59. They took 9 days to arrive and my postman delivered them. Unfortunately that price has gone up to double or even more since then. If you want to me to tell you the name of the supplier you will have to ask me by private message because we cannot give the name on the boards because it is against the rules. I had no alternative but to do this because I felt so ill I was virtually bedridden and I had begged my GP for a prescription because I had taken Levothyroxine before he said he would be struck off if he did because my TSH was in range.
As far as B12 goes, symptoms are more important than results and this is what your doctor should be taking note of. There are many people who had a result in the 300s who were found to need B12 injections. So check out the list of signs/symptoms of B12 deficiency here:
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Vitamin D
GP will only prescribe to bring levels to 50nmol. But improving to around 80nmol or 100nmol may be better
Once you start supplementing B vitamins (after further testing if necessary) . Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Thank you. I am taking Vit D supplements atm and although I do have symptoms of low B12 I can't distinguish which are caused by hypo or B12. I had a test for PA and that came back fine.
If your GP has taken advice that’s all well and good for them but isn’t it a patient’s right to both seek a second opinion and ultimately to decline to follow any GP or Endo’s advice?
I spoke to another GP this week and they stand by the Endo's advice and told me to disregard T3 levels and come back in 6 months 🙄. So far the GP advice has been tediously predictive. Apparently symptoms are being caused by over medication....yawn!
I hope this is helpful as i too have thyroid disease and have taken both T4 and T3.
I started on T4 only which in respect to energy levels very good, It also gave me strength back in my hands which were unable to open bottle tops.
However it came with a lot of disabling side effects, brain fog, disturbed vision, weight gain and increased hunger, changes in skin pigmentation.
After being on T4 only for several years and on a dose of 125mcg my energy levels just took a slump again and again i wasn't able to do much as i was always tired.
I was put on combination therapy after my last visit to the specialists where i had gained more weight and become very lethargic and my hair had started falling out again.
I was not responding to T4 only, even at times where my TSH was 0.1 i felt very sleepy and struggled to keep my eyes open. The thought of holding a job down was so far out of my reach i really did give up any hope. After about four months of Combination therapy i applied for jobs, have not got one yet but i have a bit of energy to try which is an improvement and hope.
My advise would be if you can get out of bed, clean your house, do the shopping and cook the dinners your doing good. If you can not do those then maybe your medication needs a change.
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Help please bloodtests
latest private blood results...please help 
Recent Bloods
T3 Above Limit: Ok or not?
New Bloods - Very Confused
