Am I undermedicated? Confused about where to go next.

[Johndillon]

I was diagnosed hypo/hashimotos about 10 months ago. Main symptoms include fatigue, brain fog, forgetfulness etc... Confused for me by fact I had ME/CFS about 18 years ago that’s never fully left me (I simply thought it was this at first).

Anyway docs puts me on T4 as with everyone etc... I initially felt amazing, but its gradually tailed off and Im now getting a lot more brainfoggy fatigued days than is normal.

I started with 50 of levo, went up to 75, then 75 alternating with 100, and now finally to 100 based on my last results. Im 3 weeks into 100 and Im still not really noticing an improvement.

My issue is that my TSH has been hanging around 4 on the 75/100 mark, but my doctor seems to think this is OK because its in the normal range. Am I right in thinking I should be aiming for a TSH of more like 0 to 1? If this is the case Im clearly not going to get this on 100.

Im am also seeing a functional medicine specialist in the hope of exploring triggers that may help the hashimotos. Shes suggested my conversion isnt that good and has put me on various supplements to supposedly help this (again cant say its worked), plus paleo gluten free low oxalate diet etc...

Doctors as we all know are useless on this subject (I had to tell my doctor I had hashimotos she said I didnt as I didnt have a goiter, depite high antibody readying stec...) so I dont really trust them. Equally functional doctors are expensive and as Im not really making progress despite going paleo, gluten free and spending a lot of £ on supplements.

This is all compounded by the fact 2 months go I had to have urgent surgery on a perineal abscess that in hindsight Id had for many months. This is now not healing and Im more or less where I was 2 months ago (5cm deep wound). Not having an optimised thyroid function make question whether or not this may be the reason why Im not healing normally. Or conversely am I wrong to blame foggyness and fatigue on thyroid when Ive got this going on.

All in all I feel confused about which way to go. Should I be focusing on getting an optimized dose of T4? Should I consider T3+T4 or NDT?

Thanks in advance for advice. Im adding my results below. Most are NHS so v basic, but the thriva ones include all the additional stuff.

25 Jun 2020

Serum TSH level

4.01 mu/L

Serum free T4 level

20.1 pmol/L

26 Mar 2020 *

Vitamin D

57.7 nmol/L

Total B12

276 pmol/L

Ferritin

92 ug/L

Folate

36.2 nmol/L

Triiodothyronine (FT3)

3.83 pmol/L

Thyroid-stimulating hormone (TSH)

4.84 mIU/L

Thyroglobulin antibodies (TgAB)

507 kU/L

Thyroid peroxidase antibodies (TPOAb)

360 kIU/L

Thyroxine (T4)

99 nmol/L

Free thyroxine (FT4)

18.4 pmol/L

* since this Ive been supplimenting D3, B complex

23 Mar 2020

Serum TSH level

4.37 mu/L

Serum free T4 level

18.9 pmol/L

13 Dec 2019

Serum TSH level

6.79 mu/L

Serum free T4 level

14.9 pmol/L

24 Oct 2019

Serum TSH level

8.28 m[iU]/L

Serum free T4 level

12.8 pmol/L

8 Oct 2019

Serum TSH level

9.46 m[iU]/L

Serum free T4 level

14.1 pmol/L

[SlowDragon Administrator]

Please add ranges on results

Ft4 and Ft3 especially

Also B12 and folate

Vitamin D is still too low ...aiming to improve to at least around 80nmol and around 100nmol maybe better

Exactly what vitamin supplements are you currently taking?

100mcg levothyroxine is still a low dose....

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[Johndillon in reply to SlowDragon]

Not 100% sure what you mean by range. Ive attached the thriva page I see.

OK so what Im reading is that I need to carry on incrementing with my doctor and hopefully Ill get there.

Otherwise for the NHS results

Serum free T4 level

Normal range: 12 - 22

Serum TSH level

Normal range: 0.27 - 4.20

Suppliments

Vit D

Super B complex

l-tyrosine

Wheatgerm Oil

Multi vitamin (ProMulti Plus)

NT Factor CoQ10

NAC

5-HTP

Zinc

Thanks

[SeasideSusie Remembering in reply to Johndillon]

Johndillon

Multi vitamin (ProMulti Plus)

Multivitamins are not a good idea for a variety of reasons. They often contain the cheapest and least absorbable form of active ingredients and they tend to contain things we should be tested for and only supplement if deficient. If they contain iron then the absorption of everything else will be affected as iron should be taken 2 hours away from other supplements.

Your Multi contains the following which should be tested for first:

Calcium

Iodine - and at 200mcg per recommended serving that is more than the daily recommended amount and we get quite a bit of iodine from food such as milk, yogurt, white fish, etc. Also, levothyroxine contains about 65mcg iodine per 100mcg Levo. Iodine is anti-thyroid, it used to be used to treat hypERthyroidism before the current radioactive iodine treatment so can make hypOthyroidism worse. It's particularly not recommended when Hashi's is present.

*

It contains zinc and you say you take this as a separate supplement - why? Were you tested?

*

It contains 50mg B6 at the recommended dose and for regular daily use the recommended amount is no more than 10mg.

*

Vit K is the K1 form and that is the blood clotting form. The form recommended when taking Vit D is K2 because that's the form that directs calcium to bones and teeth and away from soft tissues and arteries where it can be deposited and cause problems.

Selenium - although it contains the recommended form of selenium l-selenomethionine, it also contains selenite form which is not recommended.

*

Magnesim - it contains magnesium citrate which is fine but also contains magnesium oxide which is the least absorbable and both forms are used for constipation, the oxide form being harsher.

*

Vitamin D 57.7 nmol/L

How much Vit D are you taking? With your current level, to reach the level recommended by the Vit D Council/Vit D Society (100-150nmol/L) you would need about 3,500-4,000iu D3 daily, along with D3's important cofactors of magnesium and Vit K2-MK7.

*

Total B12 276 pmol/L which equals 373.98pg/ml

This is a poor result.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

*

I can't read the results in your picture. Thriva have the reference ranges with the results I believe, if not they are the numbers at either end of the green bar (light and dark green) on the bar graph they provide.

[Johndillon in reply to SeasideSusie]

OK thanks v much for this analysis of the vitamins. The multi vitamin is short term but I was wary as Ive not ready muchy good about it. I guess Ill stop it considering the iodine etc...

Is there a post on here or some resource elsewhere which tell me the specific types and forms of vitamins I should and shouldnt be taking/testing for hasimotos + the ranges to look for? This would be really useful. I realise I dont need to simply take them I need to test for them and if deficient. Ranges is also difficult because they very massivly between who you ask. Getting this from people with experience of the conditions would really help.

[SeasideSusie Remembering in reply to Johndillon]

Johndillon

Is there a post on here or some resource elsewhere which tell me the specific types and forms of vitamins I should and shouldnt be taking/testing for hasimotos + the ranges to look for?

What you need to take is individual to you, which is why we ask members to post their vitamin results, then we can respond with what is relevant to that particular member.

Ranges aren't universal, so we need the range that comes with the result then we can give the most appropriate suggestion.

[SlowDragon Administrator in reply to Johndillon]

Agree absolutely with SeasideSusie yiu don’t want that multivitamin.....

With Hashimoto’s we don’t need any extra iodine

Need to regularly retest vitamin D, folate, ferritin and B12 and only supplement what we need

[Johndillon in reply to SlowDragon]

Thanks

[SeasideSusie Remembering]

Johndillon

Can you please add the reference ranges for all your results, ranges vary fron lab to lab so we need the ranges to interpret your results and compare them accurately.

Also, what supplements are you taking?

[greygoose]

Impossible to read anything on that photo, much to small, and just goes blurred when magnified.

But, there must be the ranges somewhere on there. A typical FT4 range is 12-22. Have you got anything that is written like that?

That said, just glancing through your results (which are also difficult to read spread out like that) I would agree that you have a conversion problem. What exactly is your doctor giving you for that?

I had to tell my doctor I had hashimotos she said I didnt as I didnt have a goiter, depite high antibody readying

FYI:

Technically, your doctor is right. Without a goitre you don't have Hashi's. You have Ord's. Ord's is Hashi's without a goitre, but we tend to lump them together and call them both Hashi's. In the UK, doctors call them Autoimmune Thyroiditis.

[Johndillon in reply to greygoose]

Thanks for your input.

Why does this site reduce the size of the image its not like that origionally.

My doctor is unaware of my FT3 as NHS dont do this test they only do TSH and T4. Perhaps I should bring this up with them.

NHS ranges are

FT4

Normal range: 12 - 22

Serum TSH level

Normal range: 0.27 - 4.20

Thriva seems to be

FT3

0-10

TSH

0-10

T4

0-300

Ft

40-30

Folate

0-60

Ferruitin

0-400

B12

0-569

D

0-375

[SeasideSusie Remembering in reply to Johndillon]

Johndillon

The site doesn't reduce the size of the image, you just have put too much to fit.

Those aren't the ranges, as mentioned above the ranges are the numbers at either end of the green bar (include both light and dark green). For example, the FT4 range is 12-22 with Thriva.

[Johndillon in reply to SeasideSusie]

But it does reduce the size, this isnt the image I uploaded its way smaller.

Sorry I find this confusing. On Thriva for FT4 I see 0 to 30. It has various differently coloured sections all with different ranges (low, optimal, normal, high V high). 17-22 is the green normal range is this what you need only the normal ranges?

Thanks

[SeasideSusie Remembering in reply to Johndillon]

Johndillon

17-22 is the green normal range is this what you need only the normal ranges?

You have to include both light and dark green areas. Thriva's range for FT4 is definitely 12-22. The way they show it is very confusing and unnecessary.

Thriva apparently also provide a report in this format:

healthunlocked.com/thyroidu... which shows the proper ranges

But it does reduce the size, this isnt the image I uploaded its way smaller.

You

have simply put too much into the picture. If you had included just the

first two white boxes they would have shown as normal size, it's just

impossible to fit all that you have included and show at normal size. Either post the report style as shown in the link above or type them out and include just the range shown between the low/high numbers on the green bar but include both light and dark green areas.

[greygoose in reply to Johndillon]

I've no idea why this site works the way it does. We often ask that question ourselves!

It is not possible to have a range that starts at 0. If your FT3 were at 0, you would be dead. So, I doubt those are the Thriva ranges.

Taking a multi-vit is not a good idea for many reasons:

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.

Your supplement does not contain iron, but it does contain calcium, iodine and copper. You should be tested for all of those before supplementing.

And, it contains magnesium oxide.

And, it contains vit D but no vit K2 - it has K1. Taking vit d requires you to take vit K2. So, all in all, it's not a good supplement.

Oh, and forgot to say, as that multi contains biotin, you should have stopped one week before the blood test every time. Did you do that?

[Johndillon in reply to greygoose]

OK thanks well this great given I paid a "functional medicine expert" good money to be given these suppliments. Appreciate your advice.

[greygoose in reply to Johndillon]

You're welcome.

Are the other things supposed to help with your conversion? Veru doubtful they will. He didn't even give you selenium, and that's the most important for conversion.

From what I've seen on here, functional medicine doctors don't know any more about thyroid than the average GP, they just have a lot more weird ideas.

[humanbean]

Your doctor saying that a TSH of 4 is fine because it is in range is being sadistic, and he/she is completely wrong. Please read this thread :

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

GP should retest Thyroid 6-8 weeks after each dose increase in levothyroxine

Always make sure to get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Always get same brand of levothyroxine at each prescription

Remember to stop taking vitamin B complex a week before ANY blood tests as biotin can falsely affect test results