Could you please private message me if you could recommend someone. Thank you.
I saw GP today as results back TSH 6 (0.30 - 4.20)
They did other tests as I said I felt faint last week and it was thyroid, just to prove thyroid ok.
Free T3, 4.1 (3.10 - 6.80)
Free T4, 15 (12 - 22)
Told I was thus in range. When asked for increase in Levo was told I could try going from 75mcg to 100mcg on the weekend only, otherwise I might go over!
Now so fatigued and TSH going up each year on Levo, hard to believe it will make any difference. Think I have tried nearly all the other options.
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When asked for increase in Levo was told I could try going from 75mcg to 100mcg on the weekend only, otherwise I might go over!
Oh, why are doctors so uneducated about treating hypothyroidism. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. There's no way you will "go over" from your current results by increasing your Levo by just 50mcg per week!
With these results
TSH 6 (0.30 - 4.20) - over range
Free T4, 15 (12 - 22) - 30% through range
Free T3, 4.1 (3.10 - 6.80) - 27% through range
Go back and see a GP (one who might have a brain). Print off this list of signs and symptoms of hypothyroidism, ticking off any that affect you.
Present this to the GP, refer to your poor results and ask for an increase of 25mcg daily and present the following in support of your request:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You can also refer to NHS Leeds Teaching Hospitals who say
I will print this info from the links and take to GPs, as have to do the bloods again in 7 - 8 weeks. It will be helpful to have thyroid levels from a UK site. As when I showed the US Bianco articles - standard hypothyroidism treatment falling short etc, I was told not to believe everything I read. It says Drs should be telling their patients. I'm going to normalize your TSH, but your going to be at a higher risk for gaining weight, experiencing depression and fatigue. It is also more likely that your cholesterol will go up. All my main symptoms, just need to leave out the bit about normalising TSH.
I did mention symptoms on Thyroid Uk site, but got no response, so I asked if he did not believe them and got no response. I was dazed before appt and very confused and shocked after, I had not thought that a Dr would dismiss articles instantly from past president of American Thyroid Association. Maybe I needed to be thinking more clearly.
Think I will just stick to thyroid level info at next appt and with a different GP.
Doctors don't like patients to bring in 'papers or research'. Nether do they read research and seem to believe that if the TSH is somewhere below 10 that we're on sufficient.
Tell him you've been advised that the aim is to get your TSH to 1 or lower (you wont go hyperthyroid as many professsionals seem to believe). Your FT4 and FT3 should also be in the upper part of the ranges, but they rarely test these.
He should increase by 25mcg every six weeks after a blood test and aim is a TSH of 1 etc.
What has happened to 'education for doctors/endocrinologists - with regard to hypothyroidism - as the majority seem to know nothing more than keep the TSH 'in range' when the aim is 1 or lower, not higher. They seem to believe that anywhere in the range is the aim.
If doctors are unaware of the clinical symptoms we can develop and that they are supposed to provide sufficient thyroid hormones to relieve them, avoid them as we'll never recover. Reading this forum you will eventually know more than the doctors
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Have you ever had antibodies and vitamins tested?
What vitamin supplements do you currently take
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
When saw different GP week before and said I don't feel well, faint, fatigue etc, I think it is the thyroid he said lets take blood pressure, was 185/99, so he said lets try a different monitor. Result was the same. Then said he would measure peroxidase antibodies, think he wanted to prove Thyroid Ok, result > 600 (0.00 - 34.00). I showed him the articles by Bianco, past president of American Thyroid Association, about symptoms linger despite normal blood tests and standard hypo treatment falling short and changing paradigm although medical community believe treatment approach a success, so he told me not to believe everything I read and that there was no evidence that T3 worked - wonder where he read that? Was like a red rag to a bull or flag? and told me time up, people are waiting. Guess I better stick to uk texts and went to different GP this week, the one who kept me on 50mcg levo for ten years and said she does not wont me to be over medicated. Running out of GPs but yes will try another one next go, if I can summon the energy.
23 May I did medichecks Ferritin 82.7 (13-150), Folate 9.72 (>3,89), B12 Active 157 (37-188), Vit D 77 (50 175). I have been supplementing before esp iron and vit D and knew they need improvement. But hard to believe this is the only problem?
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Thank you for all this information SlowDragon. I had started the gluten free diet again few weeks back. But I recently got very bad hayfever and could not sleep, so decided to go back on carbs and gluten, then got chest infection, so now back to sleeping too much. Will go back to gluten free when hayfever season finishes. My system was not coping. I was asked which hayfever tablet I had tried and said it was the one they withdrew from the market as people were having heart attacks on it and was told but that was a long time ago.
Will also try and follow book obesity code, which someone helpfully recommended on here. Also showed page to GPs which said eat less, exercise more paradigm loved by drs is not working and it is hormones that need to be looked at and It is not a character defect as they like to believe, that we are just weak willed. He certainly did not want to believe any of my printed info or that my high blood pressure was due to low thyroid and I think was trying to prove that and I think both GP's think they now have.
I did challenge it esp as it made no sense to me. GP said she did not want me to get over medicated I cld re test in 6 weeks. I said that seemed a long way off and last year my TSH on levo was 5, so I had already waited a long time. So felt I had to agree to 5 days on higher dose and two not. Guess I could just take it daily and then re test.
Feel so tired now it is hard to believe that it will make much of a difference. So think I will have to find someone who believes in lower TSH ranges, as she was very reluctant to increase at all.
Have read on here others stories of being refused endo appointments when on levo only, I have asked for referral in the past, then my Free T3 is measured and I am told it is in range. So I asked if I could take a different Levo, I was told to ask chemist, then I asked if it was possible to try the liquid one and was told they do not deal with that. Looked up price of liquid one and now realise it is expensive. So still feel like there is a long way to go.
So you officially are now on 100mcg 5 days a week and 75mcg 2 days a week?
You could just up that to 100mcg everyday
Either way, you need FULL Thyroid and vitamin testing 6-8 weeks after any dose change (or brand change) in Levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
On Levothyroxine TSH should be under 2 and FT4 in top third of range
Email Dionne at Thyroid Uk for list of recommended thyroid specialists endocrinologists
You don't need GP permission to see an endocrinologist privately.
But first step is to get use to 100mcg Levothyroxine dose
Also trying strictly gluten free diet often extremely helpful
Always get same brand of Levothyroxine at each prescription
Roughly where in the UK are you?
You don't need to be supplementing iron unless had full iron panel and iron was low. Essential to test iron very regularly if supplementing as its toxic in excess
Yes I will take 100mcg daily. Just looked at new batch given before I saw GP, and it has been changed from Mercury Pharma, which I always had, to NorthStar! Actavis.
Do you have any comments on this, I have never heard of it? I will look up posts. I do want to try a different one, but not sure that now is right time, as can't face getting even worse, faint/dizzy again today and feels as though blood pressure up again. Bloods said I was pre diabetes, over for cholesterol status, Liver ALT and uric acid/gout! - included in tests.
Full iron panel: iron 22.82 (5.8- 34.5), TIBC 66.12 (45-72), UIBC 43.3 (20-50). Transferrin sat 34.51% (20-50). Panel is better than I thought it would be, but I have been supplementing once or twice a week. Yes I know someone who has a very serious condition of excess iron in blood that leads to heart condition. So know I must not go high and maybe it is best left at the current range or could I stop supplementing as it looks ok?
There is one other GP I have not seen in the practice I will try and book, I am sure that the last 2 I saw will not accept TSH under 2, as I have always been kept over that. Last year when it was 5 and I was told to wait and see, maybe it will go down. Guess I should have said or up.
I live in London. If GPs will not accept lower TSH range I will consider endo, but on hearing other peoples experiences, it does sound like they will not be helpful for me - don't think I have faulty gene. I have also considered BHRT clinics as some look at HRT and thyroid and sometimes NDT, however the ones I called have waiting lists that are months long and costs are more than endo so I have not booked.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that doseage should be increased so that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
I do not intend to take statins, I believe my level acceptable and as you say I believe it will go down when the thyroid has better treatment. I am still amazed that Drs so happy to offer statins etc. but not a tiny bit more levo. I did also watch statin nation, which a member mentioned, it was fascinating., made me more determined to say no to statins.
I do follow levo guidelines for blood tests and join the 7.30am crush at hospital.
I will print the NHS guidelines on levo treatment TSH ranges and leave it with GP and see if they read and believe it?
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