My last 2 sets of results are in my previous posts. Currently taking 75mcg levo and bloods from Thursday are as follows:
TSH 0.01 (0.3-4.2)
T4 17.4 (12-22)
T3 6.2 (3.1-6.8)
My ferritin was also tested and is 15 (16-204)
She told me she has spoken to the Duty endocrinologist and I am now hyperthyroid which is very dangerous, I must reduce to 50mcg for 2 weeks, then 25 then stop completely!!
I told her that t3 and T4 are the important indicators and she told me I’m incorrect and TSH is the key and I must stop. I told her I would think about it...
I queried central hypothyroidism and she said it absolutely isn’t that.
Please help! I am booked with endocrine at the end of January.
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Colliebear
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Oh Colliebear 😞 I’m so sorry. I can’t believe they want to take it away! You are most definitely not Hyper or going that way.
I’m glad you feel well, your conversion is excellent given that your FT4 isn’t high.
Do you want to fight it and stay as you are? Or are you willingly to adapt your dose, say 75/50 alternate days? See if that makes a difference to your tests but you still might feel well? You could do that alongside raising your ferritin?
I don't think she should lower her dose at all based on her TSH reading alone as her free Ts are in range. The fact that she feels well confirms that she is on the right dose for her.
We should never, ever agree to take a dose that makes the DOCTOR feel comfortable...it's about how the PATIENT feels!
IMHO, the OP should find a new doctor who knows what s/he's doing.
It makes me so angry every time I read posts about ignorant doctors not caring at all about their patients' wellbeing, but just obsessing about the stupid, useless TSH!!!
What is she doing about your below range Ferritin? Low ferritin can suggest iron deficiecy anaemia. She needs to do a full blood count and iron panel.
You are not hyperthyroid, it is a physical impossibility to go from hypOthyroidism to hypERthyroidism. You can be overmedicated and what tells us that is the FT3 result, yours is in range so you are not overmedicated. Both your GP and the endo are wrong, which is no surprise as most doctors know very little about thyroid disease and most endos are diabetes specialist with little knowledge of the thyroid.
Use the following information to explain to your GP why you are not willing to lower your dose and make yourself ill:
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.
Central hypothyroidism would have been obvious at diagnosis, you would have had TSH either low, normal or very slightly elevated with FT4 at the very bottom or below range. High TSH, usually 10 or over, is the trigger to diagnose Primary Hypothyroidism.
The comment from Dr Toft could possibly backfire. He has specified that TSH must be between 0.2 - 0.5, and the OP's TSH is 0.01, so is well below the lower level mentioned by Toft.
I think the OP has a few possibilities open to them, but none of them are going to be easy.
1) Get a second opinion from another GP. Unfortunately I think GPs usually follow the dictates of hospital consultants, no matter how stupid, ignorant and sadistic the consultant is.
2) Get a second opinion from another endocrinologist. Unfortunately, finding one that will ignore a low TSH and just pay attention to the Free T4 and Free T3 will be difficult.
3) Go into the private system. But private doctors are still supposed to follow the stupid rules about TSH, so it would be possible to pay out lots of money and still get nowhere.
4) Buy Levo off the internet. I think it is relatively cheap compared to many other drugs.
5) Find research papers showing that low TSH is not a problem. But that will be difficult, there is no guarantee that the doctor will read them, and may still ignore them even if they do.
The comment from Dr Toft could possibly backfire. He has specified that TSH must be between 0.2 - 0.5, and the OP's TSH is 0.01, so is well below the lower level mentioned by Toft.
Possibly. I tend to go by this:
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.
which is what I used when discussing my suppressed TSH (<0.02) with the Advanced Nurse Practioner at my surgery. He is the one who is OK with a suppressed TSH as long as FT4/FT3 are somewhere in range. It works for me with the ANP, yet the GP is a different kettle of fish, she will only consider TSH and nothing else (which is why I wont see her about my thyroid!).
I was thinking a possible strategy is to immediately and quietly make a transfer to a new GP surgery! Not always possible if in a more rural area.
These results look great, particularly if symptoms are also good. Reducing the dose is a huge risk, don't ever reduce based on an ignorant blood test reading when you feel great. You will likely end up very ill (particularly if you go to zero hormone. Completely abominable advice), and I've noticed from forum posts it's often very hard if not impossible to get back to the good health enjoyed before the decrease.
Obviously your not hyperthyroid. Your FT4 and FT3 are both within range
Your ferritin is dire. Low ferritin affects thyroid and LOWERS TSH
Has GP done full iron panel test for Anaemia?
If not insist they do so
If iron is also low you will need iron supplements or possibly iron infusion
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Likely your vitamin D, folate and B12 may be low too
Have these been tested recently?
Get them tested at same time as full iron panel
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If not done this way Suggest you request Thyroid is retested. .......say you "forgot to stop your biotin supplement " ......So blood test is likely incorrect
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
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
As a vegetarian it can be extremely difficult to maintain good iron levels. All plant based iron is non-heme and much more difficult to absorb
GP should be monitoring iron and ferritin levels if you are being prescribed iron supplements
If you have Hashimoto's then trying strictly gluten free diet is frequently helpful or essential
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you so much, I knew people here would understand. I was furious and really quite upset after she called. It wasn’t my usual GP, I think she is a locum or new. I will be making an appointment to see my usual GP ASAP.
I have had antibodies tested this time, result was 9 (0-34).
Regarding my history in June I had free T4 11.2 (12-22) and TSH 0.73 (0.3- 4.2). In July I was retested (no meds) and T4 was 10.2 and TSH 0.96.
I started on 50mcg levo and in September my results were TSH 0.15 (0.3-4.20), T4 14.6 (12-22) and T3 5.7 (3.1-6.8).
For the ferritin she gave me ferrous sulfate tablets, but I find them hard to take around the levo (am) and citalopram (pm). And I understand they were unlikely to help much anyway.
You could push GP for iron infusion or private iron infusion is about £400. Obviously if you don't find root cause, levels start dropping again
So NHS have tested TPO antibodies and they are negative. But NHS refuses to test TG antibodies if TPO antibodies are negative, so you will need to test both antibodies again via Medichecks or Blue Horizon
Many Hashimoto's patients only have raised TG antibodies
Or 20% of Hashimoto's patients never have raised antibodies at all
For the ferritin she gave me ferrous sulfate tablets, but I find them hard to take around the levo (am) and citalopram (pm). And I understand they were unlikely to help much anyway.
Ferrous sulfate will help if you can absorb the iron. Take 500mg - 1000mg vitamin C with each iron tablet to improve absorption.
There are a few types of iron supplements usually prescribed by the NHS - either ferrous sulfate, ferrous fumarate or ferrous gluconate.
I've tried the first two of those and could only tolerate the fumarate. I had to take it with food to be able to cope with it. NHS-prescribed iron supplements can be bought in pharmacies, without a prescription, with the pharmacist's permission. I've bought from Lloyds and Tesco pharmacies with no problems in the past.
The box I've linked to will last 28 days on the maximum dose, which is one tablet, three times a day. It isn't compulsory to take three a day! Some people prefer to take only two a day.
Ferrous fumarate 210mg cost me about £6 for the last box I bought. It is cheaper if you buy online - Ebay has several sellers.
Even if it was true that you are hyperthyroid (which by the FT4/3 figures and your stated satisfaction re health) you simply cannot reduce T4 doses as quickly as that . Reduce by 50ug in 2 weeks then 25 in the next then stop taking T4 at all? That's mad talk! I've said many times that your body is not like a car, that you accelerate or brake according to whim. Changes if they are necessary should be in no more than 25ug steps with at least a month between changes. Your body's working simply can't respond as fast as the dr wants. lt is a fact that when changing doses when TSH is suppressed, the TSH usually takes weeks to respond and may take years or never happen at all, depending on how long you have been on medication, So if you go back on a lower dose, your TSH may not have responded, falsely enticing the doctor (who only believes in TSH as a diagnostic) to lower T4 further. The term describing sluggish TSH change is called "Hysteresis" and is wellknown in the literature
Did you have the earliest blood draw, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards? If not your reuslts would be skewed so I'd ask for a new blood test following the above advice.
It is difficult if we're quite newly diagnosed and it is a learning curve if we want to recover our health and be symptom-free.
Doctors are apt to panic if TSH is very low and the assumption is that we've gone from hypOthyroidsm to hyPERthyroidism.
The following is from an 'expert' in hormones and this is an excerpt:-
When it comes to diagnosing and treating hypothyroidism, conventional medicine is using the wrong test. Doctors are taught that all they need to do is look at the TSH (thyroid stimulating hormone) level. They believe that this one blood test tells
them all they need to know about the person's thyroid hormone status--both for diagnosis and for treatment. Dr. Lindner calls this the "Immaculate TSH Doctrine".
This is obviously false; it is contrary to the most basic principles of endocrine feedback control.
The TSH level is not a measure of thyroid hormone levels--only the free T4 and free T3 are. TSH is a measure of how much the hypothalamic-pituitary system is attempting to stimulate the thyroid gland. A "normal" TSH tells us only that the
person doesn't have failure of the thyroid gland. It does not tell us that they have sufficient levels of thyroid hormone. A normal TSH does not "rule out" hypothyroidism. Many, and possibly most people with various degrees of
What ever you do don't take her advice instead change Doctors to one who actually knows something about thyroid disease because she has not got a clue and will make you very ill.
To raise your Ferritin try eating pate on toast a few times a week because that will definitely help.
Doctors are continuing to go by the TSH which is completely wrong they need to look at the T4 and T3. The reason your TSH is so low is because your pituitary gland has noticed you have enough thyroxine in your blood and does not need to stimulate your thyroid to make any more .... stupid Doctor!
Your GP is an idiot! You need to be prescribed iron, or at least be tested for iron deficiency anaemia with that ferritin result. You should not reduce your levo if you feel well as your actual thyroid hormones are in range. Time to find a new doctor with a clue.
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Some people prefer to take only two a day.
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