Hi there, I am new here, I was referred because my bloods suggest subclinical hypothyroidism. I would love some input on my interpretation and plan if possible!
I have plenty of the symptoms and it runs in my family. I am 28. I also have an MECFS diagnosis, and delayed cortisol production in the mornings (DHEA is fine). I was vit D deficient but now normal.
1. GP will not treat, and wants to re-test in three months time to confirm whether treatment is appropriate.
2. I have been advised by some to start Metavive right away. I have decided to wait, hopefully be officially diagnosed by the NHS in a few months, and then decide on the best course of action. Otherwise I may mask a diagnosis and it would be best to have it on my record at least.
3. I gather the bloods suggest primary hypothyroidism, and the small number of antibodies suggests Hashimotos (?). I am on an autoimmune type diet anyway and plan to stick to it.
4. I have decided not to take iodine. I am on selenium, D3, zinc, and a few other vitamins, minerals, omegas, and liposomal glutathione.
What do you think?
I've been reading Kharrazian, Durrant Peatfield, Paul Robinson.
Thanks in advance!
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1. GP will not treat, and wants to re-test in three months time to confirm whether treatment is appropriate.
If this is your first test with raised TSH then retesting in 3 months is normal protocol. This is because TSH can be raised due to non-thyroidal illness and they want to rule that out.
When you have your next test, follow the advice always given here:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
*When on thyroid meds, last dose of Levo 24 hours before the test, take that day's dose after the blood draw. This is because if you take your Levo before the blood draw the test will measure the dose just taken and show a false high. If you leave longer than 24 hours the result will show a false low.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
2. I have been advised by some to start Metavive right away. I have decided to wait, hopefully be officially diagnosed by the NHS in a few months, and then decide on the best course of action. Otherwise I may mask a diagnosis and it would be best to have it on my record at least.
Who suggested that? You are right to wait for your next NHS test if this is your first test with raised TSH.
3. I gather the bloods suggest primary hypothyroidism, and the small number of antibodies suggests Hashimotos (?). I am on an autoimmune type diet anyway and plan to stick to it.
Maybe but not necessarily. Primary Hypothyroidism is not diagnosed until it reaches 10 here in the UK (although some countries do diagnose when it reaches 3).
However, when FT4 is below range with a normal, low or minimally elevated TSH then that can suggest Central Hypothyroidism which is where the problem lies with the pituitary or hypothalamus rather than the thyroid and if it's Central Hypothyroidism the TSH doesn't get very high.
As for antibodies, yours are very low and would need to be nearer the limit of the range to suggest Hashi's. However, you can have negative TPO antiobodies but positive Tg (Thyroglobulin) antibodies but these haven't been checked. You can also have Hashi's without raised antibodies. With Hashi's you'd have swings from "hyper" (which is a false hyper) to hypo symptoms. My TPO andTg antibodies have been tested many times over the last 20 years and both always are in the region of 6 to 12 with range <34 for TPO and <115 for Tg, but I don't have Hashi's.
4. I have decided not to take iodine. I am on selenium, D3, zinc, and a few other vitamins, minerals, omegas, and liposomal glutathione.
Iodine is not a good idea for anyone unless tested and found to be deficienct, then supplemented only under the guidance of an experienced practioner. Iodine solution used to be used to treat overactive thyroid before the current radioactive iodine treatment, so it can cause hypothyroidism or make it worse.
I also have an MECFS diagnosis, and delayed cortisol production in the mornings (DHEA is fine). I was vit D deficient but now normal.
ME/CFS is a bit of a dustbin diagnosis. There is no test for them so it's basically a diagnosis by process of elimination.
Presumably you had loading doses for your Vit D Deficiency? You will need supplementation for life if you had Deficiency. The Vit D Council/Vit D Socieity/Grassroots Health all recommend a level between 100-150nmol/L, so you should now be on a maintenance dose 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. You can do this 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 as recommended by the Vit D Council.
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.
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. 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.
Dr Myhill suggested Metavive, when I attended her workshop. She works with MECFS patients (agree, rubbish diagnosis) and says the NHS don't do enough for thyroid issues and that they are common in MECFS diagnosed people.
I thought TSH had to be below 1.8 (Dr K's thyroid book) for central/pituitary related hypo, is that not correct?
Hashis- I do get lots of the hyper symptoms; nervousness, anxiety and irritability
, mood swings, difficulty sleeping, persistent tiredness and weakness, sensitivity to heat, palpitations, trembling. Could this suggest Hashis is possible?
Diagnostic evaluation of central hypothyroidism includes serum thyroid-stimulating hormone (TSH) and free thyroxine (T4). In central hypothyroidism, free T4 is low and TSH may be low, normal, or minimally elevated. Magnetic resonance imaging may reveal sellar or parasellar pathology.
The hallmark of CH are low serum levels of circulating free thyroxine (FT4) into the hypothyroid range associated with low/normal serum TSH concentrations. Some patients with CH with a predominantly hypothalamic defect may have high serum TSH levels, a potentially misleading diagnosis which may be confused with subclinical primary hypothyroidism. Although serum TSH levels may be normal or high, the TSH is biologically inactive and cannot stimulate the thyroidal TSH receptor.
**
Hashis- I do get lots of the hyper symptoms; nervousness, anxiety and irritability
, mood swings, difficulty sleeping, persistent tiredness and weakness, sensitivity to heat, palpitations, trembling. Could this suggest Hashis is possible?
Nervousness, anxiety, mood changes, insomnia, fatigue, palpitations, heat intolerance can all be symptoms of hypothyroidism:
I mentioned my hyper symptoms because you said Hashis patients swing from hypo to hyper and I seen to get sypmtoms that could be either. I did think if you had ANY antibodies you therefore had autoimmunity (such as Hashis or Graves) - so perhaps not the case?
I did think if you had ANY antibodies you therefore had autoimmunity (such as Hashis or Graves) - so perhaps not the case?
I think (but don't take as gospel) that virtually everyone has some antibodies, I've never seen anyone's results here with zero antibodies, but generally it's significantly increased concentrations that most frequently indicate thyroid autoimmune diseases. However, as I said, you've only had TPO antibodies tested and there's also raised Tg antibodies which can suggest Hashi's when TPO result is negative, and also Hashi's can be present without raised antibodies.
I mentioned my hyper symptoms because you said Hashis patients swing from hypo to hyper and I seen to get sypmtoms that could be either
None of those symptoms you mentioned are definitively hyper symptoms, they can be hypo symptoms as the list I linked to shows hence "I seen to get sypmtoms that could be either". Compare the list of hyperthyroidism symptoms with the list of hypothyroidism symptoms given above and you'll see some overlap:
Hashi's tends to start with a hyper episode and doctors very often mistake this for Graves/overactive based on over range FT4/FT3 and suppressed TSH (and often incorrectly give the patients Carbimazole).
But it doesn't matter if it is Hashi's, the end result is the same - hypothyroidism - and the treatment is the same - Levo.
Suggest you get BOTH TPO and TG antibodies tested....many Hashimoto’s patients only have raised TG antibodies
Essential to test folate, B12 and ferritin too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Medichecks often have special offers, if order on Thursdays
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thanks, my multivit doesn't contain iodine luckily. I've been on a sugar free paleo style diet for about a month now and my guts seem to be working better and I'm feeling better for it. I'm seeing that you seem to consider Hashi's a possibility whereas SeasideSusie suggests central hypo!
I'm seeing that you seem to consider Hashi's a possibility whereas SeasideSusie suggests central hypo!
I explained that Central Hypo could be a possibility with the results you have and the information available at the time of my reply, but you have since given a lot of new information which paints a different picture.
In my first reply I said:
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
Now you've said you take Biotin in a Multi, if you had said that after my first response I would have said your results are possibly incorrect.
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