Hello. I’ve just joined the group and would be really grateful for some guidance.
I was put on levothroxine about 10 years ago when struggling to conceive. TSH was around 4.5ish I recall. We never did conceive sadly - despite many rounds of IVF and other complications, endometriosis, high natural killer cells etc - unexplained fertility. That’s all water under the bridge now aged 47 and I now have the joy of being perimenopausal. I’ve been gaining weight drastically and asked my GP for blood tests which I’m struggling to interpret. I’d be grateful for some hints/tips/thoughts as to whether I should do more investigations?
TSH 2.8 (morning fasting test before had meds) - on a later non fasting mid day test it was 1.62)
T4 - 16.8
T3 - 4.2
SE Thyroid peroxidase Ab conc 382.5 ku/L - (range 0 - 5.6!) TPO positive
It’s this last result which has confused me. The notes say no action required as known hypothyroidism.What does this actually mean? Do I have hashimoto? If I do, should I be worried?
Separately, my Haemoglobin estimation is slightly high at 147 (range 115 - 145) but Gp not concerned.
Also my serum calcium is slightly low - 2.19 (range 2.20 - 2.60) and Gp recommended taking supplements but I’ve read somewhere I shouldn’t take supplements?
Vitamin D is 71 (range 50-200)
Serum folate is 6.2 (range 3 - 20)
Vitamin B12 is 599 (range 200 - 910)
Cholesterol is 5.4 so a bit high and frustrating the nurse has told me it’s because I eat too many cakes biscuits and crisps which I do not eat at all!!
I’ve read a few posts on here from people asking for advice and it’s a bit of a minefield as a newbie so very grateful for any pearls of wisdom!
Many thanks!
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Lincolnshirelass
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TSH 2.8 (morning fasting test before had meds) - on a later non fasting mid day test it was 1.62)
T4 - 16.8
T3 - 4.2
It would be helpful to have the reference ranges for your results, these vary from lab to lab so it's essential that we know your own ranges to be able to interpret your results. It could be that you are undermedicated, your TSH suggests that but we can't interpret your FT4 and FT3 without the ranges.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges if that is wher you feel well.
SE Thyroid peroxidase Ab conc 382.5 ku/L - (range 0 - 5.6!) TPO positive
It’s this last result which has confused me. The notes say no action required as known hypothyroidism.What does this actually mean? Do I have hashimoto? If I do, should I be worried?
Yes, your antibody result is postive, confirming Hashimoto's (doctors call it autoimmune thyroid disease). Hashi's is the most common cause of hypothyroidism. Hashi's isn't treated, it's the resulting hypothyroidism that's treated.
Hashi's is where the immune system attacks the thyroid and gradually destroys it.
Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Also my serum calcium is slightly low - 2.19 (range 2.20 - 2.60) and Gp recommended taking supplements but I’ve read somewhere I shouldn’t take supplements?
We suggest that supplements aren't taken without first testing to see if we are deficient. With it being just slightly below range, maybe looking at where you can increase calcium in your diet as a first step but also see below about Vit D.
Cholesterol is 5.4 so a bit high and frustrating the nurse has told me it’s because I eat too many cakes biscuits and crisps which I do not eat at all!!
I daren't comment on what your nurse has said as I'd probably be banned 🤬
It's very likely your cholesterol is high due to undermedication, it's a symptom of hypothyroidism.
Vitamin D is 71 (range 50-200)
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
If you want to improve your level then you'd be looking at supplementing with maybe 3,000iu D3 daily and retest after 3 months to check your level.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
This is low, folate is recommended to be half way through range. Including folate rich foods in your diet may help. A good quality, bioavailable B Complex containing methylfolate (not folic acid) will help.
Vitamin B12 is 599 (range 200 - 910)
If this is ng/L or pg/ml (they are the same) then the following applies:
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."
The B12 in the B Complex will be enough to help raise your level.
My suggestion for a good B Complex is Thorne Basic B. Avoid any B Complex that contains Vit C as this keeps the body from using the B12 that's included, Vit C and B12 should be taken 2 hours apart.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
So what we have is a TSH that is too high for a treated Hypo patient, FT4 that is 60% through it's range with FT3 at 50% through range. Your FT4 and FT3 are reasonably well balanced, which shows that your conversion of T4 to T3 isn't too bad but they're on the lowish side.
As mentioned, generally Hypo patients tend to feel better with TSH 1 or lower with FT4 and FT3 in the upper part of their ranges, so that would possibly be 70% plus for FT4 and 60% plus for FT3. But we don't expect doctors to know this because they are taught very little about treating hypothyroidism and they're also taught that all that matters is the TSH level just being somewhere within it's range. This is why so many Hypo patients are kept unwell and why this forum exists and has almost 120,000 registered members.
You mention that you are gaining weight, that is one symptom of hypothyroidism and suggests undermedication. Have a look at the list of signs and symptoms of hypothyroidism here:
Do you have any? If so download and print the list, tick off all that apply so that you can point out your symptoms to your GP and that they suggest undermedication.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
The B12 result is ng/L
So what I have suggested above is appropriate. The B Complex will help both folate and B12 levels.
The Nurse with the cholesterol comment needs to update her knowledge about the connection between hypothyroidism and raised cholesterol.
The above post has a link to an article in 'GPonline' from 2010 . Written for GP's by Specialist Registrar's in Cardiology and Endocrinology.
Also , this article can be used to support a request for a dose increase in Levo if you need one , to lower your TSH slightly. (although that does depend on what the lab range for that fT4 test is.. if your fT4 is at the very top of the lab range or over it , GP may be unwilling to increase dose.)
Cholesterol is 5.4 so a bit high and frustrating the nurse has told me it’s because I eat too many cakes biscuits and crisps which I do not eat at all!!
Well, if she'd said that to me, I would have laughed in her face! She obviously knows nothing about cholesterol. It has next to nothing to do with your diet. Cholesterol is made in the liver, and the liver strives to keep the level steady all the time. They more you eat, the less it makes. The less you eat, the more it makes. Problem is that when T3 (the active thyroid hormone) is low, the body cannot process and excrete cholesterol correctly, and it tends to build up in the blood. Raise the FT3 level and the cholesterol level will reduce.
High cholesterol is not a problem in and of itself. It is a symptom, not a disease. The body needs cholesterol to make cell walls and sex hormones, to synthesise vit D and to maintain the brain. Low cholesterol is far more of a problem than high cholesterol. But, the medical community have been brainwashed by Big Pharma, who want to sell statins, to believe that high cholesterol will cause heart attacks and strokes. And none of them have the gumption to do their own research!
So, next time a nurse comes out with something like that, please educate her, for all our sakes. lol
Thanks anyway. My friend suffered badly from taking Statins. Just wondering as his triglycerides were the basis of diagnosis and later the disability from the Statin treatment.
Always trying to gain knowledge 😊
Good luck Lincolnshirelass. You’ve come to the right place.
Yes, thyroid hormones are required to release triglycerides for energy from fat cells. They become elevated with poor blood glucose control - another indirect hypo system, and usually correlate with high levels of LDL cholesterol & low levels of HDL.
When a healthy diet is eaten, adequate thyroid hormones generally return lipids back to healthy levels.
Thanks so much. I’ve long thought his problem was thyroid related. Im suspicious. Too late. He now has Inclusion Body Myositis we believe from the Statins. In a wheelchair, very weak, muscles melt away. So sad. Sorry to poster, don’t mean to highjack post.
If not had a coeliac blood test done before, request one now BEFORE considering trial on strictly gluten free diet
you have high antibodies this is known by medics here in UK as autoimmune thyroid disease. Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thanks again for all of the comments and helpAnd links. Of course it would have helped if I mentioned I am on levothyroxine - 100 mcg but and additional 25 mcg every other day.
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.
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.
Thanks again everyone! I’ve sent a message to my GP to ask if my dose can be increased and bloods tested again in 6-8 weeks. Will see how I get on. I’ve also started a new nutritionist guided diet plan and it’s actually gluten free so it will be interesting to see how that goes.Alas all a little too late to help me squeeze into the holiday Bikini but maybe next year 🤣
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