Advice on new blood test results

[Sick-and-Tired]

Hi everyone,

I'm 30 years old and have been feeling really ill for over a decade. Using advice on here a couple of years ago I ordered some blue horizon tests and found that I had hashimotos.

Two years later and the doctors still say I don't have a thyroid problem. About a year ago I paid to see a consultant who agreed to write a letter to my GP suggesting I trial Levothyroxine.

Sadly I still feel just as ill as ever, although since being on Levothyroxine my skin, which used to be terrible, is completely clear now. But apart from that, I really don't feel better.

I'm currently taking 75mcg/100mcg on alternate days. I was taking 100mcg for a while but my TSH was 0.05 (0.35-5) so my doctor insisted my dosage be reduced and refused to look at anything but TSH.

The last time by TSH was checked was November and it was 1 (0.35-5).

I always have my blood tests first thing in the morning, fasting, with 24 hours since my last dose of levo.

I got a medichecks thyroid ultravit test last week and got the results through today which are posted as the picture.

I wondered what you guys thought? I would like to get my TSH back down to 1 but I'm concerned my doctor won't want to increase my dose again.

I currently take 20,000iu of vitamin D3 a week, which I get on prescription. I would like to ask for that to be changed to 5,000 a day. I know I don't have to get a prescription but I feel that by doing it this way I keep it "on the agenda" with my doctor because otherwise they don't seem to care about my vitamin D level, even when I'm deficient. My level is down since June when it was 92. I also take k2 and use a magnesium oil every night.

I've been trying to work on my ferritin and folate for some time. I take a high quality B complex (although laid off it for a few weeks in the lead up to my blood test) and also eat liver once a week, as well as attempting to eat a good diet with lots of leafy greens.

I also use a transdermal b12 oil, as well as the B complex, but see that my active b12 is actually quite a lot lower than it was when it was last checked (which was admittedly 2 years ago, when it was 97). Since it's still well within the reference range, is that still ok?

Any advice on these results would be greatly appreciated!

[Heloise]

Hi sick, I never expect doctors to "care" but it would be nice if they did their job. Your T4 and T3 are low in range which anyone can see and so your TSH has moved up as well. But your FT3 is the important result and overrides the others. You need to adjust your Levothyroxine.

Cofactors are important to levo. Have you thought to use Betaine HCL with meals in order to extract nutrients, especially minerals. I've learned when minerals are deficient you also lose vitamin nutrition. You may be eating the right foods but you may lack the stomach acid for good digestion.

Your antibodies mean you are having problems with gluten probably and dairy possibly. Have you thought of avoiding either?

[Sick-and-Tired in reply to Heloise]

Thanks so much, this is really useful.

Do you think my GP will understand the significance of my FT3 level, considering they wouldn't test for it? I have an endocrinologist appointment in 6 weeks, although from googling the guy it seems he's just a diabetes specialist.

I don't think I've tried betaine HCl... I've used solgar digestive enzymes (I stopped because the tablets were too big for my throat, but I will take them if they are actually doing me good!) Is that along the same lines?

I have tried going gluten free although I was very low when I attempted it and kept messing it up. I will prepare properly and do that again.

Thanks again!

[Heloise in reply to Sick-and-Tired]

I'm sorry to say that the TSH seems to be the end all of their diagnosis. There is a lot of resistance to making a change in that but once you begin treatment it is somewhat helpful to follow guidelines of having a low TSH and an FT3 in the upper third of range if that is what causes relief of symptoms. We all have our bodymind that tells us when something isn't right. It may be dark moods or just a laxity about life. When my TSH was over 2.0 I collapsed on the golf course. You have signs, lol. I had to increase my NDT but if your adrenals are weak due to a lot of stress from one thing or another you may not be able to raise your dose without feeling hyper. You have to look at the whole body as to why you even have Hashimotos though you don't know what you have, right? You are thirty years old and should be feeling great. It's a struggle to deal with conventional medicine. Many of us have been forced to treat ourselves. Functional doctors are much more useful as they look for causes. Perhaps someone can be recommended in your area. The internet has some excellent people like Dr. Bergman.

HCL is the acid your stomach should be producing but often struggles if you have inflammation. Enzymes are good as well but not used at the same time. youtube.com/watch?v=SDphVgA...(Not working as expected?)

[Hashihouseman]

There was an interesting piece of research a few years ago which looked at Thyroid levels in a cohort of subjects who were children of exceptionally long lived parents and compared their thyroid levels with those of their married (living) partners after excluding any with confounding pathology including thyroid related pathology. The results which were statistically significant were that the children of long lived parents had higher tsh lower t3 and similar t4 to their partners with lower ancestral longevity. In other words mid range TSH like yours was statistically significantly correlated with longevity! The triple thyroid profiles of those individuals looked just like yours!..........

[SlowDragon Administrator in reply to Hashihouseman]

But weren't presumably on Thyroid hormones

On Levothyroxine we need low TSH

[AnneEvo in reply to SlowDragon]

Sorry about hijacking this post but why does TSH need to be low on Levo?

[SlowDragon Administrator in reply to AnneEvo]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Levothyroxine dose should be increased slowly in 25mcg steps until TSH is under 2. (Many need it lower than that)

Bloods should be retested 6-8 weeks after each dose increase.

Vitamin D, folate, ferritin and B12 all need to be optimal too

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 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 Levothyroxine

sps.nhs.uk/wp-content/uploa...

[AnneEvo in reply to SlowDragon]

Thanks. I was aware of most of this but just didn't really understand why TSH needed to be suppressed.

[vocalEK in reply to SlowDragon]

Tried to look at the NICE guidelines, but got this:

"CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Limited. It is available to users outside the UK via subscription from the Prodigy website."

[Hashihouseman in reply to SlowDragon]

There's a huge debate to be had on that, whether TSH is purely a thyroid gland signal or it as some published reviews suggest it also signals other organs and tissues possibly deodinase enzyme activity? And even if it only signals thyroid T4 production levels and timing, at what level does it represent homeostasis? it may be that it needs to be marginally or even substantially less under Levothyrixine dosing than it would be at a homeostatic level with healthy glandular secretion but I haven't seen any evidence or peer reviewed opinions on that? There's a logic to it either way; an indication that thyrotropic effects are thoroughly shut off because we have sufficient T4 replacement or an indication of optimal balance in free T4 free T3 ad TSH at whatever combination of replacement and residual thyroid activity and intracellular conversion is going on.... Currently I an choosing to regard it as an indication of many variables rather than just a sign I have shut down the hypothalmic pituitary thyroid axis with exogenous T4 and or T3. I may change this attitude with more evidence and debate: ) Recent research suggesting the HPT axis can distinguish and respond to both plasma T3 and T4 is swaying me to avoid supressing my TSH whereas the theories and evidence that TSH aggravates thyroidal tissue pathologies makes me cautious in that!

[SlowDragon Administrator in reply to Hashihouseman]

I agree, but many of us find that TSH becomes suppressed on low dose Levothyroxine, even when FT3 is below range

TSH is almost always suppressed on any dose of T3

[Hashihouseman in reply to SlowDragon]

I must be even more weird than the rest of the nontypicals! I can take quite significant doses of T3 either within desiccated thyroid or liothyronine supplement to levothyroxine and my TSH will not be suppressed. In fact to suppress my TSH with T3 I have to take levels which I cannot physiologically tolerate in terms of symptoms. The thing that suppresses TSH for me (and in theory for euthyroid individuals) is always too much T4!

[LAHs in reply to Hashihouseman]

That's fascinating.

[SlowDragon Administrator]

All your vitamin levels are too low, in part probably because you are under medicated. See GP for dose increase in Levothyroxine to 100mcg daily. Retesting 6-8 weeks later

Getting vitamins optimal is essential.

Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 3000iu (you might need higher dose! for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

You probably need vitamin B complex AND sublingual B12 daily. You may be able to cut or reduce B12 after few months

If you are not already gluten free, ask GP for coeliac blood test or orders online for under £20 just to rule it out before trying strictly gluten free diet

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

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Sick-and-Tired in reply to SlowDragon]

Thank you, I'll get a mouth spray for the vitamin D. It did go up when I was on losing doses (20,000 3 times a week) but has slipped back down now that they've kept me on the maintenance dose.

I am going to try going gluten free again, but prepare properly this time!

I have also made an appointment to make a case to up my Levothyroxine.

Thanks again!

[vidu222]

Sick and Tired, not sure if you're still reading this, but I have a small suggestion. Ferritin levels need to be above 100, if not can cause many rare symptoms. Please check my previous posts for all unusual symptoms. For Iron injections, there's a new form of Iron Injection available in the Iron clinic in London. Costs 600 pounds. But was worth it for me.Please read more on Ferritin deficiency.

[Sick-and-Tired in reply to vidu222]

Sorry, for some reason I didn't see the email notification to see your reply!

That's so interesting, I've never heard of iron injections before. Unfortunately with me working part time at the moment it would take me a long time up save up for that! I've bought an iron oral spray supplement, so I'll give that a go and see what level I can get it to.

Thanks again so much for your advice, and if I can get the funds together in future it could be worth a try!

[vidu222]

Hello SicknTired, don't worry about getting the injections then. Try Mega Foods Blood Builder tablets. And take Solgar Iron Bisglycinate (20 or 25 mg, it's non-constipating).Also, take MethylFolate and Vitamin B12 (Jarrow Formulas, 5000 mcg is great). All this will help you raise energy levels and correct Ferritin levels in about 8 weeks. Please read reviews for Mega Foods blood builder. Hope this helps. I've been through this myself and I know how hopelessly debilitating it can be. Good luck.