Hi folks I have made an appointment with Dr who specialises in autoimmune thyroid disease (she’s taken over from Dr Toft at spire in Edinburgh)
Just wondering if I should order tests on medichecks first? It’s a zoom call appointment so thought this might be best, but wasn’t sure if this would be the best site to order them for my appointment is on the 25th of Jan.
I haven’t had tests since last March, a locum gp who just so happened to have hashimotos herself actually gave me levo 25mg but the last gp I spoke to said to have more tests but basically if my tsh was under 5 she wouldn’t prescribe me anyway so I didn’t book them and they blocked my repeat prescription.. and as usual said I was depressed normal party line from my gp surgey 🙄 which I’m not btw. Tia Sarah x
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It’s not an NHS appointment it’s private but wasn’t sure if she would want to run tests herself anyway or if finger prick ones from medichecks would be ok x
I would be tempted but that is because I am a control freak. I figure that if I had some new bloods to go on, I would have a clearer idea of whether, for example, I wanted to look at T3 treatment and it might give me a sense of whether it was suitable and guide me a little in my part of the consultation.
Additionally, I’m a skinflint, so I would be wondering if it would save the price of a second consultation. I think it would at least help to get more value out of the first.
Whether the endo likes finger prick tests or not, we don’t know mind... I’m guessing you could ask? It would be a bit frustrating if they said that they were all pointless. I mean they’re clearly not, but hey.
I think it would be good for her to see aswell because I havent had my antibodies tested for a few years, and not all the vitamins either. I also spent £1000 last October seeing a functional doc which was a bit of a waste of time also not able to work and a tight fifer at heart 😂 I think I’ll just order them hopefully get the results before the appointment x
I think I would pay to get a full thyroid panel including the vitamins and minerals beforehand.
I would then post the results and ranges on here and get considered opinion from the forum members, before even speaking with an endocrinologist.
In this way you will have already been given understanding of anything that " looks amiss " and solutions on how to improve your health.
You will then be better placed and with a knowledge base where there is no bias nor vested interest, but just logic, common sense and focused on your best interest.
I agree with other posters that you should get your own tests first - not least because then you have something concrete and recent to discuss on your zoom call rather than speculating on what blood results might be or just discussing thyroid issues generally. Good luck x
Please add actual results and ranges from results BEFORE Gp prescribed 25mcg levothyroxine
Standard starter dose of levothyroxine is 50mcg unless over 65 years old
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you I was going to order this one but it doesn’t include cortisol or magnesium, all of my vitamins are now optimal because I take supplements, my tsh was the lowest it had ever been I think it was 1.9 (will check) before the locum prescribed me the levo, I think she only gave me it because she has hashimotos herself but of course the other gps won’t. I still have all of the symptoms, lessened since becoming optimal on vitamins but still have hair loss, dry skin, rashes, fatigue easily, low heart rate, swollen face, gum recession, palpations and anxiety, popping ears and pain in my neck glands before my period freezing cold hands & feet. I have a yeast overgrowth confirmed with tests from functional doctor so that’s an issue too but gp again refused to treat me and just said I had depression 🙄
I’m a really fussy eater so unfortunately a lot of these diets aren’t suitable for me x
I’ll check these when I get home, I’m actually having an issue logging in and trying to checkout but I did find these they must have been done by the functional doctor x
I finally found them I couldn’t find them last week I’d put them in with my business stuff 🤦🏼♀️ lol My tpo has been coming down since 2017 was 189 to start with 109 when it was last checked. I’ve just had my medichecks back to so I’ll pop that in another comment also found my last test for folate etc and all are optimal x
You have Hashimoto’s confirmed by high TPO antibodies
High prolactin
Low ferritin
All four vitamins need to be optimal
When were vitamin D, folate , ferritin and B12 last tested
What were results
Are you on strictly gluten free diet?
Or tried it
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 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.
Thank you I was going to order this one but it doesn’t include cortisol or magnesium
Magnesium testing is pointless and it definitely isn't worth spending more money to get it tested.
Only about 1% of the body's magnesium is found in the blood stream, the other 99% is in various body tissues. If the magnesium was found uniformly around all the cells in the body that wouldn't be a problem. But it isn't. When magnesium runs a bit low in the blood the body "steals" it from other tissues and puts it into the blood. So a magnesium result from the blood could look perfect but other tissues could be deficient - and you'd never know from a test result.
As long as people take sensible doses of magnesium supplements, and also have functioning kidneys the body will deal with an excess of magnesium by excreting it in urine.
For anyone with poor kidney function, supplementing magnesium must be avoided, and supplementing should only be done under the control of a doctor who can monitor the patient for any sign of magnesium building up.
The maximum dose of magnesium people can take safely is roughly 250mg - 400mg per day.
There are different types of magnesium supplement, and everyone needs to decide for themselves which one might suit them the best. Some useful links :
Let us know about the Doctor you see. I saw Mr Toft and he was great. My Graves has flared and I need to see someone. NHS answer is to knock my thyroid out with radioactive iodine and then life on Thyroxine.....!! I get all my bloods done privately, I'd still be waiting on an NHS follow up otherwise, Medichecks have been great, though the finger test is a pain literally, as you need a fair bit of blood.
It is a hard one as many private docs also work in NHS and so they may well do the same, you are paying more to be seen far quicker! My NHS consultant has requested antibodies tested but she said no need to test vitamins or ferritin....and also antibodies now being sent only because of the previous tests. Then from this result she will know whether to send for a scan or not...so there is a process it is not normal for them to test everything at the start and NHS and private would be same service, just private you can request more tests as you are paying for them I guess. I looked up my doc when I was referred and they work for a private clinic too!
So if you get some first you are kind of starting the job off for them, and then they would probably want to send off for certain tests again. Being private depends how much money they would charge for further tests, 25th is not far away so may be worth waiting to avoid paying more if they issue some tests the same!
Just had my medichecks results back and found my last folate/b12 test which are all fine. This is the lowest my tpo antibodies has been was 189 in 2017, 136 2018, 109 2019. I haven’t had my thyroglobulin tested since 2017 was 7.76 ug not sure if the medichecks is a different measurement but if not it’s gone up a lot. My mum actually has hashimotos Graves’ disease and thyroid eye disease (she had the operation but it just came back) my fear was this would happen to me 😥 x
Both Thyroid Peroxidase antibodies and Thyroglobulin antibodies are sometimes found in Graves patients. But it is the TSH receptor antibodies, specifically the stimulating form, which cause the hyperthyroidism of Graves.
They have a similar effect to TSH but continue to stimulate the TSH receptor over an extended period of time and thus result in excess release of thyroid hormone.
Ah ok thank you! I don’t know where I got that from always thought tpo was hashimotos and tagb was graves that’s reassuring. Have my appointment on Monday with private endo who specialises in auto immune thyroid disease so fingers crossed, I might just need to keep doing what I’m doing as all my levels seem to be coming down but I’m still symptomatic x
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Feedback on private Blood tests please, before my Endo appt.. 
Do my bloods and private test say I should be doing anything?
Seeing endo unexpectedly and have private blood test on the way!!!
Endo nurse says I must take levo before my tests!!!
Should i pay private to see an ENT quicker?
