I've seen a doctor recommended by Thyroid UK for the first time this week, and he has asked for many many tests.
Has anyone heard of them and found them helpful? Is it really absolutely necessary to do them all? It will cost more than two times my monthly salary, so I will have to prioritise. Which one should I choose to do first?
These all sound extremely expensive, and not standard tests at all
On this forum we only recommend Thyroid and vitamin testing. Standard price is £99..... often on offer at £79 or sometimes even less
As you have Hashimoto's low vitamin levels are very likely
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Have you had these done?
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
I don't think you are on T3 (yet?)
But If also on T3, make sure to take last dose exactly 12 hours prior to test
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thank you for all this information. It's amazing all the support I receive in this group! I haven't tested vit D again, but it was so low last time, that I just supplement because it is probably necessary. My B12 was very high without any supplementation. Does it mean that it doesn't enter into the cells?
Yes I had levothyroxine in the past, but it didn't work for me. I might be wrong but my understanding is that T4 is a storage hormone, so it's not a problem if T4 is low as long as T3 is above mid range. Is that right?
The answer to T4 as just storage is uncertain, some recent research suggests that receptors in the brain respond more readily to T4 than T3. Clearly this research was carried out on rats not humans but personally I prefer to keep my T4 just above mid range and T3 near the top of range. Levothyroxine on its own does not work for me but with T3 is fine.
Considering that TRα1 is well-established as the predominant isoform in brain, and that TRα1 responds to both T3 and T4, we suggest T4 may play a more active role in brain physiology than has been previously accepted.
My rT3 was very high last summer. It is the reason why I have lowered my NDT. Now it's too low but because I don't wan to raise the rT3 I have added T3 instead of raising NDT. Does it make sense?
Not really, as there are many different reasons for high rT3 (and no research really seems to have worked out what to do about it or exactly why it happens in any individual case) and your free T4 is low so you'd need to raise it an awful lot for high free T4 to result in high rT3 (and your conversion is fine). Some people do well with under range free t4 but others find it necessary to keep free T4 at least at the bottom of the range, if not higher.
That's a serious outlay and possibly won't stop there, to easy to get swept along with more tests then treatments costing lots of money. Personally I would walk away from this doc !
My GP did all the tests the private Endo asked for.
Have a look through the pdf of tests offered by Genova, you might find some of the other hormone related onesm again you would need TUK as your "practioner":
Wonderful tests, not a thing wrong with any of them, excepting their cost. They say money doesn't bring us happiness, but it certainly gives us free reign to accessing all manner of wonderful, and hopefully useful information about our bodies. BUT ...... unless we have very deep pockets, unfortunately we have to take a more judicious approach to testing. Maybe identifying what your NHS GP will test for you, or which are more of a priority given your symptoms, etc. but always remembering that testing isn't the end of it, you will presumably have to then pay for the treatment (there is no obligation on the GP to act upon private test results, rather, the patient can be referred back to the private Dr ordering the tests). I recall from your last post though, that you have already had a four point salival cortisol test, followed by the short synacthen test - why would you need the saliva test repeated, and did you chase up the issue with your bike accident and the apparent contradiction between the result, and the conclusion reached?
Hi MaisieGray, Thank you for your answer. Yes I chased up about the synacten test, and the GP told me that he wasn't sure, and I should ask directly the endo.
I think this private doctor wants to repeat the saliva test because mine is from March 2018, so quite a while ago. However, I had stage 3 adrenal fatigue at the time so I don't think it can change that much. stage 4 is adrenal insufficiency, and we know from the synacthen test that I don't have that, and I don't think I spontaneously got better back to stage 2 without a proper treatment.
Nobody responsible orders that many tests after just one consultation. I fear you will end up not just out of pocket but none the wiser. I urge you to have none of the tests but instead find someone who will listen to your story, examine you carefully and then with consideration and explanation recommend some initial testing. Something is very wrong here.
I'm a bit concerned that Thyroid Uk has him on their list of recommended ones. As many thyroid suffers have not held down a full time job I would think he is too expensive for most people's means and the costing should be mentioned on his profile. I realise Thyroid Uk will have added him in good faith from a member but he either needs this putting on his profile and/or a question mark put with is recommendation.
May be the member who recommended him can share experiences.
I think it'd be worth concentrating on the hormone profile and go from there. DHEA can be low in Hypothyroidism. The effects of this is poor conversion and elevated cortisol. You should have a generic blood count done by your GP. Buying some books such as the Magnesium Miracle and reading about allergies and cardiac issues in it would be cheaper than all those tests!
My FM private doctor got into a complete spin when I set the priorities for my treatment and asked what tests/processes were required,in order of priority, to address the issues. I put thyroid at the top of my list.
We parted company very quickly because anyone working privately that can’t understand limited funding and not is willing to set out a plan involving necessary and desirable processes in an order relevant to us, should not be engaging with the vulnerable i.e. patients. With private health care insurance there is a similar process of agreeing the level of testing and treatment so they should be familiar with the process.
You can obtain these tests yourself that's what I have done and posted the results on here plus the ranges for answers. The one that I have just had is through medichecks called ultra and cost around £78. This test gives you all the information regarding your thyroid. For an extra £39 a nurse will come to your home an take blood for you and then post off the results.
One test at a time will show you what is going on if anything.
You can then decide to do more or less at your convenience.
This is what I have done I now self medicate and never visit the GP or Endos. Before I had my thyroid removed I spent over £2000 what a waste of money, never again.
To clarify - Thyroid UK doesn't recommend any doctor - all of the docs are on the lists because of good feedback from at least one person and this information is passed on to anyone who asks for it. Negative feedback will result in them being removed. Miss_Nestor if you have a complaint about one of the docs please can you email your concerns to enquiries@thyroiduk.org - thank you.
I cannot find your cortisol levels anywhere so am unable to comment on them.
Seasidesusie is spot on with the cost. You do need dhea testing and the only way to do that is repeat the test.
Are you able to supply us with the results you had in March?
Slowdragon is right you are under medicated. One grain of ndt is a v low dose. If you tolerate it well it makes sense to either increase that in 1/4 grains every two weeks or you could swap to thyroxine and t3.
I personally found ndt better for me but you need the t4 in range and a ratio of 3;1/ 4:1 t3 to t4.
Sorry I disagree on sst test as they are unreliable.( see below links)
Id suggest reading drmyhill.co.uk on the home page on the top right hand corner type in adrenal gland the gear box.
Also orchestra which takes you to the best all round article on good health I’ve read.
Slowdragon is spot on again Vit D 3 need testing and your ferretin is too low.
The last article i mentioned shows how to use a basal thermometer and plot your temps as you increase doses. That saves on cost too.
Your diet is a no one priority for hashimotos. Again this is in the second article
Diet
Absorbtion
Vitamins
Then thyroid and adrenals
But no id never pay those prices.
If you get a doctor to sign off the saliva test with dhea it’s only £66 with Regenerus. Susie is right alternative option is Genova through thyroid uk. For me the results are better( less affected by algorithms)
You have dhea tested so there is no point in testing again.
The cortisol should be 100% to the first reading
75% of the second
50% of the third
Low at night so you can sleep.
Your first two are very low
Three and 4 are ok.
Dhea a tad low but not awful.
You’ve got two options- see if your GP will allow you steroids. Likely?
Possibly not but then my opinion on gps is I avoid them if I can.
drmyhill.co.uk and in on the top right hand corner of the home page type in adrenals( the gear box will appear).
She’s an Endo of 40 years and general specialist too. She treats patients with adrenavive which you can purchase yourself to increase cortisol and the dhea will also increase some.
On a different page under orchestra it explains how to monitor your core temps and monitor thyroid and adrenal levels with a basal thermometer which is circa £6. So 36.50 degrees is the ideal with no wobbles on the average 4 daily temps. If they are out by more than say 0.3 the adrenals are still not under control.
It helps save on too many tests. Also it explains how to achieve good health and the priorities.
Diet
Vits and absorption
Then thyroid and adrenals
You will be feeling v tired I suspect but there is light at the end of the tunnel. Sadly we are forced to help ourselves but it’s good to be in control of your own health.
Thank you so much for your help. Yes, I'm 28 years old but I have less energy than my 80 years old grand dad! I'm constantly exhausted, and it's extremely frustrating to not be able to do much.
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Does anyone know why vit B12 levels would jump from lowest end of range with no supplements to well over the top on just 2500 mcg a day?
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