I'm looking for treatment for my thyroid symptoms. My blood results are in range so the NHS endocrinologist thinks it's all in my head. I have dry skin, light periods, extreme hair loss, tiredness, anxiety, low mood, fatigue and struggle to lose weight.
I got some blood tests through Medichecks and my thyroid antibodies were high. The endocrinologist told me the NHS does not treat this as it only means that I am at more risk of developing thyroid issues later on in life, which is crazy considering my symptoms.
I have a family history of thyroid issues and PCOS however the consultant said it's not PCOS as my hormones are in range, testosterone is in range and a scan shows I have no cysts on my ovaries.
I feel like it could be perimenopause but the doc has ruled that out too. I know something is wrong but I need help. I dont know whether to go to the Priory private hospital or sign up with Bupa or AXA?
Anyone able to help or suggest anything please?
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Annieza
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Your TSH is very close to the top of the range and your raised antibodies suggest autoimmune thyroid disease (known to patients as Hashimoto's).
Hashi's is where the immune system attacks and gradually destroys the thyroid.
Your FT4 and FT3 are within range so as yet not enough damage has been done to your thyroid to reduce your hormone levels to give a diagnosis of hypothyroidism.
If you can get your TSH over range and your antibodies are raised at the same time, then an enlightened doctor should diagnose and prescribe Levothyroxine.
To get the highest possible TSH you need to test no later than 9am, TSH is highest around midnight then lowers throughout the day, lowest point being around 1pm. Also eat or drink nothing except water before the test, some foods can lower TSH and coffee affects TSH.
Here is a graph of daily rhythm of thyroid hormones (TSH is the top one):
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.
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Reverse T3 testing is, to be honest, a waste of time and money. There are many, many reasons for high reverse T3 and thyroid is only one of them. When it's connected to the thyroid it's due to a build up of unconverted T4. Your T4 is low so there's no chance of any thyroid connected high reverse T3 there.
Things that can cause high reverse t3 include selenium or zinc deficiency, cortisol issues, stress, dieting, chronic illness, inadequate or low iron, chronic inflammation, high cortisol, or liver issues and any other chronic health issues. and probably several more things.
Other conditions that contribute to increased Reverse T3 levels include:
· Chronic fatigue
· Acute illness and injury
· Chronic disease
· Increased cortisol (stress)
· Low cortisol (adrenal fatigue)
· Low iron
· Lyme disease
· Chronic inflammation
Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.
Obviously your reverse T3 is low so none of this applies anyway, I'm just illustrating why it's not worth spending money on a reverse T3 test.
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Active B12 - 94.600 (25.10 - 165.00)
This is a reasonable result. Active B12 below 70 suggests testing for B12 deficiency and I always think aiming for 100+ is a good level.
Folate (serum) - 11.18 (2.91 - 50.00)
That is not the normal range for Medichecks, it used to be 3.89-19.45 but they're currently using a different lab with a range of 2.89-14.5
Can you confirm that the range you have given is correct and if it is from Medichecks.
Folate is recommended to be at least half way through range, so with the range you have quoted your Folate is too low and should be nearer 27+ but with either of the other ranges it would be considered OK.
25 OH Vitamin D - 31.6 (50.00 - 200.00)
This is very low, only just above Vit D Deficiency.
Some health authorities define deficiency as <25 and some others aas <30.
I would discuss this with your GP and see if he will follow the NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...
(click on Management > Scenario:Management)
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
If GP wont do this then I'd just buy your own D3 supplement and follow this guidance yourself.
When the loading doses have finished then it's essential to retest and see what your new level is because your follow on dose will be based on that. Please post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - and then you'll need a maintenance dose 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. 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.
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.
If you are buying your own D3 supplement then tablets are worst for absorption, best is an oil based softgel (for example Doctor's Best which contains only D3 and extra virgin olive oil, no excipients) or an oral spray such as BetterYou but these tend to contain lots of excipients.
Vit K2-MK7 and magnesium you will have to buy yourself anyway, doctors wont know about these being important.
For Vit K2-MK7 I like Vitabay or Vegavero brands.
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.
Ferritin - 159 (13.00 - 150.00)
Ferritin is recommended to be half way through range and some experts say that the optimal level for thyroid function is 90-100. Yours is over range, do you supplement?
Ferritin can be raised when inflammation or infection is present, also Hashi's is known to cause inflammation so that could be the reason.
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I dont know whether to go to the Priory private hospital or sign up with Bupa or AXA?
To be honest, unless TSH goes over range you'll be hard pushed to find anyone, NHS or private, to prescribe. It might be better to save your money for now and wait until TSH goes higher.
We have a list of thyroid friendly endos which you can send for from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
You can always ask on the forum for members to send you feedback by private message on any that you can travel to.
The B12 folate results were done at my GP's so thats why the range would be different to Medichecks.
With medichecks, my Vit D levels were low but when I did the same test with my GP a few months later, my levels were 103.6 (range states it should be greater than 49.9). I hadn't been supplementing with Vit D and the tests were done during the winter months so im not sure why the results varied so drastically. Ive started taking a Vit D supplement from Cytoplan, but didn't know about the loading that you mentioned before as well as the brands so i will try them out. Im not sure now whether im deficient in Vitamin D at all now, so not sure if this is contributing to my hair loss? Is it possible to have too much vitamin D?
I've never supplemented with Iron either as it makes me constipated so was shocked to see my iron results so high, however, again, when I did these same tests with my GP my results were:
Serum iron level- 22.8 (range 9.0- 30.4)
serum unsaturated iron binding capacity- 39 (range 13.0 - 56.0)
TIBC - 61.8 (range 45.0 - 72.0)
percentage iron saturation - 36.9% (no range provided)
Is there any reason why the results would vary so much? The only thing that was the same with my GP results and Medichecks were the results for my antibodies. Its so hard to supplement when the results vary this much.
I think thats why I wanted to go private either with Priory or somewhere like BUPA. i dont want any medication unless absolutely necessary. i want someone to tell me whats wrong and to understand whats wrong with me other than high antibodies and what i can do about it. The NHS docs wont help unless your absolutely dying or your results are through the roof so its hard to get anyone to take me seriously.
When exactly was the Medichecks test done, and when were the GP tests done?
The B12 folate results were done at my GP's so thats why the range would be different to Medichecks.
B12 and Folate are two different B vitamins - Folate is B9.
I'm assuming B12 is the Medichecks test (NHS doesn't seem to do Active B12, certainly not at primary level).
So your Folate level is on the low side and would be better at least half way through range, so folate rich foods and perhaps a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B. Be aware that Igennus Super B contains Vit C and this keeps the body from using B12, they should be taken 2 hours apart.
When supplementing with B Complex we need to leave this off for 7 days before any blood test because it contains Biotin and when Biotin is used in the testing procedure (which most labs do) then it gives false results.
With medichecks, my Vit D levels were low but when I did the same test with my GP a few months later, my levels were 103.6 (range states it should be greater than 49.9). I hadn't been supplementing with Vit D and the tests were done during the winter months so im not sure why the results varied so drastically.
Is it possible to have too much vitamin D?
So which is the most recent Vit D result and when was it done? If the 103.6nmol/L result is recent then don't don't supplement as I have mentioned above because, yes, too much Vit D isn't good. Vit D is fat soluble and any excess is stored and can lead to toxicity.
If your GP test is not recent then I'd do a new test and get an up to date level, come back with the result and we'll look at it again. If GP wont do the test then do it with the NHS lab I mentioned above.
I've never supplemented with Iron either as it makes me constipated so was shocked to see my iron results so high, however, again, when I did these same tests with my GP my results were:
Serum iron level- 22.8 (range 9.0- 30.4)
serum unsaturated iron binding capacity- 39 (range 13.0 - 56.0)
TIBC - 61.8 (range 45.0 - 72.0)
percentage iron saturation - 36.9% (no range provided)
There is no ferritin test there, that is an iron panel, your Medichecks only did ferritin not the rest of the iron panel so there's nothing to compare.
Is there any reason why the results would vary so much? The only thing that was the same with my GP results and Medichecks were the results for my antibodies. Its so hard to supplement when the results vary this much.
Apart from Vit D what is different? If Vit D tests were months apart you can't compare them.
In range means nothing. It is like saying your feet are a normal size.and as you know a size 7 foot will not fit comfortably into a size 4 shoe.To help us to help you we need the results and the ranges.
I did them at about 11am in the morning, on an empty stomach.
How do i get an ultrasound scan? My doctor thinks there is nothing wrong with me and that my hair loss is genetic and its normal to have a light period that lasts 1.5 days. She feels my inability to lose weight is due to my age (i'm 34) and that i am not showing signs of perimenopause. She states that my hair follicles are sensitive to a normal amount of androgens and there is only Spironolactone or birth control for this.
I feel i need to go private but not sure whether to go with the priory or Bupa or to find a thyroid specialist somewhere?
I stupidly went gluten free before getting tested for coeliacs as i was desperate to stop my hair loss. i introduced gluten maybe once or twice a year but havent noticed any difference to my symptoms. However, i am still gluten free at the moment but not sure if i even need to be.
high TPO antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Getting all four vitamins optimal is always first step
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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
Come back with new post once you get retested via Medichecks in 4-6 months
Meanwhile reading posts on forum regularly can help you understand this complex disease
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