Ive been treated for underachieve thyroid for many years, mostly with Levothyroxine (current treatment) and for a brief period years ago Liothyronine (until it was stopped).
My background is a healthcare professional and I understand the physiology side of the thyroid gland and associated hormones pretty well.
My issue is that Ive recently had some blood work that has caused me to think that even though my TSH and T4 levels (the conventional markers of treatment monitoring) I might be underachieve in terms of T3.
Ive been to my GP who has written to the local endocrinology team who have basically said that because my TSH/T4 are normal they don't feel that there is an issue.
Ive got a repeat appointment next week with another GP to see whether they would consider doing a FreeT3/Free T4/Cortisol and perhaps reverse T3 (before taking the step of getting these done privately)
Even if I end up getting the bloods done privately and if I discover a problem with my T3 I then have the issue of whether I can get any health professional to prescribe and monitor my thyroid bloods (inc freeT3).
I would prefer to have a medical professional on-side with any treatments I might find myself needing - Im thinking here of possible combination therapy. I fully understand the commissioning issues around the prescribing go t3 and and familiar with the NICE guidelines on thyroid management.
I feel Im going around in circles with the local medical professionals both GPs and Hospital Endocrinology teams.
Just wondering if anyone else on the group has similar experiences and whether anyone is able to offer any practical help / advice re commencement of T3 and monitoring.
Are there any sympathetic healthcare professionals that I might be able to reach out to.
Thanks
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SOT1512
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Why was your T3 stopped? There was a time not long ago that T3 became very expensive and many people had their prescription stopped. Prices have reduced now and more people are getting it re prescribed.
What county do you live in?
You can email info@thyroiduk.org for a list of T3 friendly Endo's.
The likelyhood of the NHS doing FT3, cortisol & RT3 is extremely slim.
If people wish to prove their need for T3 then these days Endo's prefer to look at a DIO2 result which is a genetic test and you woul dhave to do this privately. regeneruslabs.com/products/...
Are you supplementing vitamin levels?
What are your latest thyroid & vitamin levels for ferritin, folate, B12 & D3?
Thyroid hormone will not work well unless we have OPTIMAL vitamin levels.
Hi Jaydee1507 - Thank you for the warm welcome. Ive added to my Bio - Ive tried to cover most of what I think may be relevant. Im based in Staffordshire. I have currently reached out x1 to GP who has contacted local Endocrinology team and as I suspected the reply was the typical response of most medics - your TSH is normal (0.41) therefore your thyroid function is OK on Levo and because to the and I quote "risk of long-term over-replacement and lack of an adequate way to stabilise or monitor t3 based replacement, we cannot offer an appointment to discuss".
They have suggested my raised HBa1c and ALT in the context of diabetes suggest fatty liver (non Alcoholic I don't drink alcohol) and suggest this is investigated. I remain convinced that many if not all of my blood markers are related to my thyroid management and have made a second appt to see GP to discuss further.
I want to have either my GP or an Endocrinologist on board to do the blood work I feel I need and if found to needT3 to have them prescribe and monitor - but am thinking that I might have to get bloods done privately - something Im prepared to do. However if bloods demonstrate that I need T3/Combo therapy my dilemma is whether to self source T3 and self dose. Im aware of the difficulties such a move would have in terms of monitoring but if I can't get a health care professional on board I don't know what alternatives I would have.
First step is to get FULL thyroid and vitamin testing
See exactly where your results are
What vitamin supplements are you taking
What are your most recent TSH and Ft4 results and ranges
How much levothyroxine are you currently taking and do you always get same brand levothyroxine at each prescription
Do you know the reason for your hypothyroidism
Do you have autoimmune thyroid disease
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
After it was suggested to add to my bio to help other members give advice Ive done that - please see my bio for details of my story. Thanks for the advice so far
If you go into Thyroid UK - thyroiduk.org - the charity who supports this patient to patient forum there is a page deicated to private compaies who will run the necessary blood tests for you and thn most people start a new post/question with the results and ranges and forum members talk you through your next best steps back to better health.
Yor situation is not unique - many of us are forced into self testing and self medicating but Thyroid UK also hold a list of recommended sympathetic thyroid specialists both NHS and private, many of whom are still offering video consults so distance does not have to be the issue.
We can't talk openly about any one Professional person but you will answered by Private Message - Chat Icon - top right - looks like a paper plane - should you want feedback on anybody you think you might like to see.
The whole situation is ridiculous - its a post code lottery rather than medical need in deciding you need for treatment and so it goes on with out numbers swelling by the day - when I joined around 6 years ago there were 15 K members and now we are tipping 134 K.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels and we need to see a TSH + Free T3 + Free T4 inflammation, antibodies and ferritin, folate, B12 and vitamin D.
You need an early morning blood draw and refrain from taking your T4 for that day until after the blod draw - so leaving around a 24 hour window from last dose of T4 and if taking any supplements leave them all off for around a wekk so we measure what your body is holding rather than what you just ingested.
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Ive added a detailed bio of my story so far inc blood work / doses etc you may find this useful in terms of any advice you can give.
I am aware of the private testing companies and may end up going down this route (unless I can find a sympathetic healthcare professional GP/Endocrinologist that would be prepared to do some baseline initial blood work.
You mention thyroid UK holds a list of sympathetic thyroid specialists both NHS and private - do you have a link and do you know how someone needing a referral would go about this.
As you say the whole issue is ridiculous and I strongly suspect is driven primarily by cost of T3 vs T4 rather than on clinical need. This is reflected by the NICE guidance which unfortunately many healthcare professionals take as gospel without realising that the whole issue around thyroid disease management is a lot more nuanced
Happy to receive any advice plus info re the bolded point above.
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