Can a GP make you lower your Levothyroxine dose?

[LaLaHew]

I’ve just received results from Medichecks

TSH 0.5(.27-4.2)

FT4 20.2 (12-22)

FT3 5.18(3.1-6.8)

I’m on 100mcg and feel good on this amount. I had to fight to move up to 100mcg from 75mcg as I still felt ill on the lower dose. I had GP test done on the same day/time and Medichecks and am due to ring for results this week. Just want to prepare for the call in case he gets panicked by low TSH and tries to lower my dose, can I refuse? What are your thoughts on my results?

[shaws Administrator]

If you feel well, I would definitely refuse to reduce.

The fact that you will know more than him and if he asks you to reduce your dose, ask him 'are your reducing due to the TSH result alone?'. If he says yes - then tell him that TSH is not a thyroid hormone and it rises if you aren't producing sufficient T3. Also give him a copy of the following which is from an expert (in USA) who cannot take on any more patients - we definitely understand why when he writes the following:. We usually feel better when TSH is 1 or lower. Highlight the appropriate parts of the following link which you should print out.

"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. Unfortunately, the medical profession has clung to the misleading TSH test since the some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues. They are taught wrong. TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range. The physician cannot object. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems.

You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

If you cannot obtain the sex-hormone, thyroid, or adrenal care from your primary care physician, call local compounding pharmacies to see if they know of a physician that provides such care.

Hormones are the most powerful molecules in our bodies, controlling the function, growth reproduction, metabolism, and repair of every cell. Our bodies require optimal hormone levels, just as they require optimal levels of essential vitanutrients: vitamins, fats, amino acids, and minerals. Insufficient hormone levels have been shown to contribute to many disorders and diseases--diabetes, atherosclerosis, high blood pressure, fatigue, loss of muscle strength, osteoporosis, autoimmune diseases, cognitive decline, increased cholesterol levels, blood clots, increased belly fat, loss of libido, anxiety, depression, and some cancers. In addition to age-related losses, many persons have hormone insufficiencies or imbalances due to hypothalamic-pituitary dysfunction, endocrine gland failure, hormone resistance and metabolic disorders. Women are especially affected by hormonal disorders because their complex hormonal system is adapted to produce and feed babies; not to optimize their vitality as in men. Women have a much higher incidence of hypocortisolism than men (fatigue, aches, insomnia, anxiety,depression, hypoglycemia, low blood pressure, PMS/PMDD, allergies, and autoimmune diseases). They also have more hypothyroidism (fatigue, aches, cold hands and feet, dry skin, weight gain, constipation).

Women then suffer complete ovarian failure at menopause. Women are being poorly served by the prevailing ignorance concerning hormones. "

hormonerestoration.com/

[LaLaHew in reply to shaws]

Thanks for the detailed response. I’ll definitely use the points you’ve provided to make him see that I have a good understanding of the condition. Hopefully he’ll allow me to be involved in my recovery!! Thank goodness for this forum 🦋🙌🏻

[shaws Administrator in reply to LaLaHew]

It would seem, if you're in the UK, that the majority of doctors are so poorly trained and that they are unaware that TSH is from the pituitary gland (it rises to try to flag the thyroid gland to produce more hormones). They believe if it is low, or very low, that we are going hyPERthyroid but that isn't the case. We need TSH to be 1 or lower but we need Free T4 and Free T3 to be in the upper part of the ranges. The latter two are rarely tested.

[LaLaHew in reply to shaws]

Thank you, you’re so knowledgeable. I’ve gathered that GPs are very scared of low TSH from all the posts on here. I just want to get all my facts right to be strong and take control of my treatment. My T4 is 84% and T3 is 54%through range. Along with symptoms subsided do you think they are good results: even though TSH is low? I don’t have any ‘over medicated’ symptoms and I’m sleeping well too(first time in years!!) 👍🏻

[shaws Administrator in reply to LaLaHew]

You will find that after a few months on this site that you'll pick up lots of good and solid information and most of us can return to good health and symptom-free. Usually it is because we look after our own thyroid health as doctors seem to only know the very basic in their 'training?' ie 'keep the TSH in 'range' and I doubt they even are aware that T3 is the Active thyroid hormone and is needed in the millions of T3 receptor cells to enable us to function as normal - the brain and heart need the most T3.

Levothyroxine is an inactive hormone (thousands seem to be fine on it but they're not on this forum). It has to convert to T3 but some of us don't do so effectively.

If we take a dose which suits us, we should feel well and no symptoms. So our dose is right Of course, all our vitamins/minerals should also be optimum.

[jgelliss in reply to shaws]

Spot On Shaws. Everyone needs/has to advocate for themselves exactly the way you say it. *Symptoms* are *Cellular* results . Lab work is *Only* a snap shot of the moment the labs where done. Who are you going to *Believe* a piece of paper or what your body is telling/communicating to you ????????

[LaLaHew]

Sorry forgot to say I am in the UK

[helvella Administrator Thyroid UK in reply to LaLaHew]

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[pennyannie]

Hello LaLaHew

Well all three results are in range and there is the possibility of another 25mcg increase within the T4 range.

How are you feeling on 100 mcg T4 ?

I read you had to fight for this increase so hope you are feeling a little better.

Since you have Hashimoto's your own levels of thyroid hormones are likely to fluctuate as with every attack your thyroid gland will be left a little bit more damaged and overtime your own thyroid hormone production will reduce.

The TSH was originally introduced as a diagnostic tool to assist a doctor in confirming a suspicion of hypothyroid, and it was never intended to be used to dose and monitor when on thyroid hormone replacement.

However this maybe the only result your doctor has received and with the " rider " that the TSH is low in range and instructing him/her to considered a dose reduction :

Yes - it's all humbug !!!!

[LaLaHew in reply to pennyannie]

Thanks pennyannie😊I do feel better on 100mcg. I did think I could increase by 25mcg, but I just want to make sure he doesn’t lower first before I try to increase. I thought I could try an increase as a trial by myself to see how I get on. I’ve been shocked by how many people are left poorly just because of ill informed GPs. Thanks for all the tips to help fight for right treatment 🙌🏻

[pennyannie in reply to LaLaHew]

Glad you are feeling better and yes, there's some wriggle room there.

It does seem that the guidelines are now caste in stone and the " guide " more of a commandment.

It is also acceptable to run a T4 slightly over range if this assists the patient acquire a better level of T3 - Professor Toft the eminent endocrinologist - sorry can't find the relevant article and can't do that cut and paste thing - but it's on here somewhere.

Levothyroxine is a storage hormone and needs to be converted by your body into T3.

T3 is the active hormone that the body runs on and is said to be about 4 times more powerful than T4. with the average person using about 50 T3 just to function.

Your conversion of the T4 into T3 - brand name Liothyronine - can be compromised if you do not maintain ferritin, folate, B12 and vitamin D at optimal levels.

This may need you to supplement yourself as you may well be in the NHS ranges and thereby considered, ok and good to go, but we need optimal levels to maintain our core strength and to convert the thyroid hormone replacement.

Most people feel well on Levothyroxine if their conversion ratio is around 1 / 3.5-4.50 : and to find this you simply divide your T3 into your T4 and yours is coming in at 3.90: which is good as most people feel well when in the lower part of this ratio at around 4.0 or under, and most people generally feel better when both their T3 and T4 are balanced and in the upper quadrants of their relevant ranges.

[LaLaHew in reply to pennyannie]

Thank you, so much useful information to arm myself with. Hopefully I won’t need to argue my case and he’ll keep my dose as it is. Being optimistic, but also prepared 😂🦋

[SlowDragon Administrator]

Your TSH is WITHIN range...as is Ft4 and Ft3

Refuse to reduce

[SlowDragon Administrator]

When were vitamin D, folate, ferritin and B12 last tested?

What vitamin supplements are you currently taking?

Have you had coeliac blood test?

Are you on strictly gluten free diet?

[LaLaHew]

Hi, last tests for the above were 20/4

Ferritin

57.7

ug/L

13 - 150

FOLATE - SERUM

> 3.89 R

4.16

VITAMIN B12 - ACTIVE

> 37.5 R

114

VITAMIN D

50 - 175 R

45.9

I’m taking vitamin D, vitamin B super complex, black seed oil and 3 Brazil nuts per day. I’m following a GF diet which has helped with inflammation. I haven’t had a coeliac test. Thanks for all of your amazing help, advice and support here🙌🏻🦋

[Marz in reply to LaLaHew]

Ferritin would be good around 70 plus. Folate into double figures. Active B12 around 70. VitD at 100 ++

How much VitD are you taking ? I would suggest around 4000 iu's daily with co-factors magnesium and K2-MK7.

Taking B12 on it's own to raise level in addition to B Complex. Which B Complex are you taking ? Ferritin is stored iron so eating iron rich foods may help unless your absorption is poor. Raising iron can take time if you supplement and needs regular testing.

Brazil nuts need to be grown in Selenium rich soil and must be stated on the packet !

Good Luck with your appointment !

[LaLaHew in reply to Marz]

Thanks for you reply Marz. I’m taking D3 800iu and Solgar B complex 100. I’ll look into raising my levels, I need to get an updated print out from doctors as he said vit D etc was all ‘ok’! What is the best thing to raise ferritin and what B12 do you recommend? Brazil nuts are good selenium source on packaging. Thanks for all your support, I’ll keep post updated when I’ve been able to speak to doctor. 😊👍🏻

[Marz in reply to LaLaHew]

800 will do very little to raise your VitD - see my response above ! Jarrow Methylcobalamin B12 from Amazon is popular - I self-inject weekly ! Black Pudding also good for iron - GF from Waitrose I have read ...

[LaLaHew in reply to Marz]

Thanks for your reply, I’ll look into changing supplements 😊👍🏻

[pennyannie in reply to LaLaHew]

I now know for good conversion I need my ferritin at around 100 :

Asda sell little tubs of frozen chicken livers - they are very clean and mild : flash fry in a little olive oil and then whizz down into a pate with maybe a dollop of mayo and keep in the fridge. A spoonful each morning helps the medicine go down and the ferritin go up - and 1 tub a week over the next few months should sort out this particular mineral for you :

I still follow this regime though skip a week here and there - at my peril !!!!!

Keep us posted :

[LaLaHew in reply to pennyannie]

Great tip, thanks pennyannie👍🏻

[Hashihouseman]

I’m on 125 and still can’t get above 4 ft3 without 5 mcg liothyronine And yes ft4 is top of range like yours and yes tsh is Significantly below euthyroid normal but trying to live on so called normal tsh is beset with hypothyroidism symptoms so GPs need to realise that the lab ranges are almost meaningless for people on replacement and that it’s up to us to figure out what doses are appropriate not them!

[LaLaHew in reply to Hashihouseman]

Thanks for your reply. You’re right, I’m learning all the time, using the great advice on here, in ways how to get my levels optimal. Thank goodness for all of you out there with tons of knowledge and advice 🙌🏻

[Angel_of_the_North]

All your results are in range, so no excuse to lower dose.

[LaLaHew in reply to Angel_of_the_North]

Thanks, I’ll insist it remains👍🏻

[LaLaHew]

Update on post: Finally managed to get results from doctor

TSH-0.61(0.35-5.5)

FT4-14.4(7-17)

TPO-386

Doctor wants to keep me on 100mcg Levo and test again in 6 months. Do you think this is good or should I try a slight increase? I feel ok, sometimes a little tired, but way better than I was in March when first diagnosed.

I’ve taken up all of your advice from original post and started additional vitD (better you spray) and B12 (jarrow) and I will do a full thyroid health check test (Medichecks)around October time to check vit levels.

Thank you sooo much for all of your amazing knowledge and advice on here: it really helps me to feel like I’m not alone in trying to get back to good health. You are all thyroid heroes 🙌🏻🌟