Diagnosed Hashimotos and TSH in range, but feeling rubbish again…

[mrsturnertobe]

Hello, I wonder if someone can help. I need some advice on what to say to the GP.

I was diagnosed with Hashimotos a few years ago after a long battle with GP’s over whether I was subclinical or not. I was suffering with many symptoms but no one seemed to believe me and my TsH was always ‘in range’. It was only after suffering infertility, trying IVF and having several miscarriages that I was finally diagnosed. My TSH was jumping around it kept seeming to be missed each time I went to the GP but our fertility clinic caught it at 40 at one point and antibodies over 2000. I have some trauma based around that I think. It’s horrible when you feel terrible but no one seems to be able to help!

Anyway, fast forward to a couple of years later, I now have a 16 month old and actually felt brilliant throughout my pregnancy but in the last 6 months I’ve started to have the old symptoms back… severe fatigue, weight gain, hair loss, tinnitus, numbness in hands and feet, breathlessness and really bad joint pain and muscle aches.

My bloods have come back and my TSH is 1.02 which I know is well within range, but has gone up from closer to the zero mark which it has been since before I was pregnant…

There is a lot on the internet about checking for T4 and T3 but I don’t completely understand it and I’m not sure what to say to my GP and how to sell it to him that he needs to do a full thyroid panel? I’m currently taking 70/100mcg levothyroxine alternating each day.

Has anyone had a similar experience and what did you do?

tIA!

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

What time of day was this test taken? Highest TSH is at 9am or earlier, TSH varies throughout the day.

Many areas of the NHS will now only test TSH which of course is useless. Suggest you buy a private test as unlikely to get far tackling the lab or GP on the subject.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Your TSH is over 1 and many people need it below 1 to feel well. Suggest requesting a dose increase on a 'trial' basis which often goes down better.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Do you do tests as per the protocol recommended here?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[mrsturnertobe]

hello and thankyou for your quick reply!

I had the test at 8.30am this morning but did take 100mcg of levothyroxine at 6am… do you think this would have altered the results?

Ferritin and folate is in range but my B12 is extremely high and has been for months. They are saying this isn’t significant as all other bloods are in range. They didn’t check D3 but I take a really high Vit D supplement.

Thankyou for the info about sticking to same brand and suggesting a trialed increase. I’ll do that.

My antibodies have only been checked once, when I was diagnosed but they were over 2000. I went gluten free and it helped I think but I gave up after having my baby. I’m trying to go gf again but it’s hard.

Should I be asking gp to check t3 and t4? Concerned he wouldn’t know what to look for?

[GlowCoach Administrator in reply to mrsturnertobe]

So test taken at a good time. Taking Levo just before the test would only affect an FT4 result which they didnt check this time. If you do get full thyroid testing then do remember to take it that day AFTER the test. This time around as TSH only tested it wont affect anything.

High B12 can be whats called a paradoxical high. This can mean that you're actually low in B12 in reality. iomcworld.org/articles/para...

You can ask GP for a slightly different test an active B12 or buy one privately to check the amount of active B12 in your blood as opposed to the serum level which the NHS usually tests.

Results 'in range' is absolutely not good enough. They need to be in the upper part of the reference range for our bodies to be able to use the thyroid hormone it has.

Exactly what were the ferritin & folate?

How much vit D do you take? Recommended to also take vit K2 to help direct it towards your bones.

Even if GP requests FT4 & FT3 the lab vetoes them so best to head directly to a private test. If GP allows the trial increase then do a private test in 8 weeks under the protocol conditions.

[mrsturnertobe in reply to GlowCoach]

Thankyou so much for your help, I really appreciate it. The brain fog doesn’t help when you’re trying to sort stuff like this out!

Ferritin is 31 (30-204), Folate is 8.5 (3-20), B12 is 729 (180-640) B12 was 982 in March!

I take 4000iu of Vitamin D. I will look for some that comes with K2 thankyou.

[GlowCoach Administrator in reply to mrsturnertobe]

So ferritin is all but deficient. Iron is complicated but best not to take supplement unless you've done a full iron panel.

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/

Even though your B12 looks more than good, in reality it may be low. Folate also on the low side, needs to be towards the top of that range around 20. Both would be covered by a good methyl B complex that would help keep all the B vits in balance.

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

4,000iu is probably fine but do get re tested in 4 or so months from when you started it to check its the right amount for you.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

[greygoose in reply to mrsturnertobe]

Hi mrsturnertobe, welcome to the forum.

You're right! He probably wouldn't know! lol Doctors in general don't know much about thyroid. And, even if he did order FT4/3 tests the lab would probably refuse to do them.

8.30 am is a good time to test to catch the THS at it's highest. Taking your levo that morning would not affect the result. But if ever your doctor does order an FT4 test, remember to leave a 24 hour gap between your last dose of levo and the blood draw or you'll just be measuring the dose you just took!

For the nutrients, just being in range is not the same as being optimal, so always best to give us the numbers: results and ranges. If your B12 is high it's probably because your folate is too low, even if it is in ranges. Ranges are only a rough guide.

What do you call a 'really high' dose of vit D? You need to be careful not to over-dose because it can be toxic at high levels, so you really need to get tested. Have you also been taking it's cofactors: vit K2-MK7 and magnesium? It won't do much for you without them.

[mrsturnertobe in reply to greygoose]

Thankyou so much for your help, I really appreciate it. The brain fog doesn’t help when you’re trying to sort stuff like this out!

Ferritin is 31 (30-204), Folate is 8.5 (3-20), B12 is 729 (180-640) B12 was 982 in March!

I take 4000iu of Vitamin D. Do you think this is too much? I haven’t taken K2 or Magnesium… I’ll look for some D with K2. Would I need a magnesium supplement?

[greygoose in reply to mrsturnertobe]

Hard to say if your vir D dose is too much without seeing a recent test. But, yes, you absolutely do need a magnesium supplement. Without adequate magnesium your body cannot convert the vit D you're taking into the form that can be used by the body. And most people are deficient in magnesium because they don't get much from food anymore, soils are depleted.

You're folate is too low, it should be at least mid-range. Folate and B&é work together, so if folate is low, B12 is goig to be on the high-side. But your B12 is fine. Doesn't matter that it's a bit over-range.

But your ferritin is terrible! You must be very, very tired. And your low ferritin is probably responsible for your hair-loss, too. But before you try and do anything about it, your doctor should do a full iron panel to see how to proceed.

[mrsturnertobe in reply to greygoose]

Thanks so much for your help. To increase folate would I need folic acid or methylfolate? If so what dose? I read that high B12 can be linked to the MTHFR gene, do you happen to know anything about that? As that is I believe linked to not being able to process folic acid?

I’m seeing the Gp on Tuesday, what would be included in the full iron panel please? Just in case she asks. And can I ask why I would not just supplement with iron?

[helvella in reply to mrsturnertobe]

In addition to folic acid and methylfolate, there is folinic acid.

Folate

Fact Sheet for Health Professionals

ods.od.nih.gov/factsheets/F...

Though even that only mentions folinic acid in a reference!

helvella - Iron Panel

A short article about explaining what is meant by "iron panel" in relation to blood tests including some reference interval (range) information.

Last updated 18/07/2024

helvella.blogspot.com/p/hel...

[greygoose in reply to mrsturnertobe]

I would say you need a good B complex, with 400 mcg methylfolate, to keep all the Bs balanced, as they all work together.

I would think that your GP would know what's included in a iron panel. I think it's pretty standard.

And the reason you need to do it and not just take irom pills is that although ferritin is low, serum iron can be high. If you took iron supplements they would just raise the serum iron and not the ferritin. And you don't want your serum iron too high. If they are both low, then supplements would be of more use. But if the iron is high and ferritin low it's better to increase consumption of iron-rich foods to raise your ferritin.