Hi
Can anyone recommend a thyroid specialist?
I’m sick of feeling tired, exhausted, losing my hair and constantly telling the doctor ‘I just don’t feel right’ for them not to understand.
I’m also suffering horrible back pain (only at night) and now swollen joints in my hands. I’m sure it’s arthritis, but again waiting endlessly for the doctor to see me.
Any recommendations for a specialist would be most grateful.
Thanks
Leanne
Your TSH was quite high when you last posted. What were your most recent results?
What were your latest results for ferritin, folate, B12 & D3? Have you been supplementing from when your levels were low?
There are a fair few details that even Endocrinologists don't know that patient groups like this one do to help make you feel well.
As you have Hashi's have you tried a gluten free diet, sometimes dairy needs to be eliminated too.
found my TSH result it is now 1.3
so you need to test TSH, Ft4 and Ft3
Test early morning last dose levothyroxine 24 hours before test
Just TSH tells you nothing
previous post
healthunlocked.com/thyroidu...
Before considering books any private consultation with endocrinologist you will need new testing including vitamin D, folate, ferritin and B12
otherwise consultation is waste of time and money
ALWAYS test early morning and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
Come back with new post once you get results, members can advise on next steps.
Have you tried gluten free and or dairy free
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
thanks for your messages, but you send the same message every time.
My doctor says I am within range. I take vitamin D, B complex and iron. All results for this have come back fine.
I have had a full blood count that says all okay.
I challenge back. Doctor says I’m within range, perhaps to exercise more. Doctor signs me off.
I would like to see a specialist who really understand the realms of my results. This is the reason so my post.
With the additional symptoms I am experiencing I just want to see someone who will give me some answers.
Results from 11 months ago are too old to take to a consultation
They clearly showed you had very low Ft3
You will need recent vitamin results too
What vitamins are you currently taking
Frequently necessary to be gluten free and dairy free
Have you given these a good trial
what does it mean if my ft3 is too low?
Vitamins I take - b complex, iron, vit c, vit D daily.
I haven’t tried gluten free … what is the link of gluten affecting your thyroid?
please add most recent vitamin results and ranges
On levothyroxine we need Good levels. Test annually
Gluten and thyroid was explained in detail by radd in previous post 11 months ago - see here
healthunlocked.com/thyroidu...
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may 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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
what does it mean if my ft3 is too low?
Levothyroxine is Ft4 (storage hormone)
Ft4 has to be converted to Ft3 (active hormone) before cells can use it
For good conversion we need good vitamin levels, good gut function and good liver function
When adequately treated most people will have Ft3 at least 50-60% through range
Before considering adding T3
Fine tuning levothyroxine, getting vitamins at optimal levels first step to improve conversion rate
Frequently with Hashimoto’s gluten free/dairy free helps
Conversion is often poor with Hashimoto’s even after all these steps
TSH 4.0 (range 0.27-4.2)
T3 3.53 (range 3.1-6.8)
Free thyroxine 20 (range 12-22)
Previous results 11 months ago and you confirmed test was early morning and last dose levothyroxine 24 hours before test
FT4: 20 pmol/l (Range 12 - 22)
Ft4 80.00% through range
FT3: 3.53 pmol/l (Range 3.1 - 6.8)
Ft3 only 11.62% through range
shows poor conversion rate
Looking for both Ft4 and Ft3 roughly equal at 60-70% through range
So before paying for a consultation you need to get thyroid and vitamins tested
Remember to stop taking any supplements that contain biotin 5-7 days before test as biotin can falsely affect test results- eg vitamin B complex
All results for this have come back fine.
What are these vitamin results
How long ago were they tested
NHS only tests for and treats vitamin deficiencies
I hear what you're saying about GP saying you are within range but you need to challenge them on that. Be very clear about remaining symptoms, get info from here to present to your GP about keeping your TSH lower and keep trying. If one doctor refuses then go to the next one. In any one practice there is usually one GP who is more flexible than others. Keep going back to them and make a bit of a nuisance of yourself (nicely) until they give in. Do not take no for an answer.
healthunlocked.com/thyroidu....
I agree with keep going back, but it’s very hard when I’m not 100% on the areas I should challenge and when I took my results last time I had lots of green ticks to say I was within range. I challenged my antibody results that did come back high (thyroid peroxidase antibodies 180 IU/ml) and told this is usual to see with a thyroid issue.
It would be nice just to sit down and speak to someone who knows a range can be personal to each individual.
We know though that within range isn't good enough to feel well. If necessary take someone with you who you've prepped beforehand to support you. Read and print out some of the link I posted above to use as evidence for an increase.
thanks so much. ☺️
What area are u in as I'm north Yorkshire and saw a good endo willing to tell gp to precibe t3
Hi Zannadoo 👋 Please can you DM me the North Yorks Endos details you mentioned to FLAMB as I need a new one too, and one who will write to NHS GPs about prescrbing T3 on the NHS. I'm in Cheshire (East) and getting nowhere! My current Endo (Private) has repeatedly reduced my daily T3 Liothyronine in the past 12 months from 30mg to 10mg. I've been taking this alongside T4 Levothyroxine (which in 12 years of taking it has done absolutely nothing to alleviate my Hypo symptoms .....but as with most of here, the NHS has continually gaslit me for 12 years, and now the Private Endo I've seen is doing the same). My TSH is always surpressed and my FT3 is extremely low in the range. Less on less T3 but the daft Endo only looks at my TSH. I also have the faulty DIO2 Gene. Many thanks in advance for sending me the Endo info. 😊
I need to find the letter as I don't know his name. I was also ref last Jun and only saw him last week he's NHS so I don't know if you're out of the catchment
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
Majority on list are private, a few are NHS or NHS and private
tukadmin@thyroiduk.org
Roughly where in U.K. are you
I don't think we are allowed to name any doctors unless they are on some list .I've seen something about it I don't want to break any rules
If you click on the person's name, then Start Chat, you can send a private message
Hi. We can't give names on here unless via Direct Message to an individual, so I have sent you a DM asking for the name of the Yorks Endo you told me about so that I can try to get help too. That location is not far for me to travel to. Not all Endo names are on the list which Thyroid UK send out. I've had the list myself, but have no idea whether any of them are worth contacting. It's direct recommendation that people on here really need. If I had a name that could help just 1 person then I'd gladly share it by DM, whether it was on the Thyroid UK list or not.
Thanks.
I’ve just retested and these are my results.
I’m out of range again on my TSH but what I’m really interested about is my T3 and thyroid peroxide antibodies as they are out of range.
Does this show I’m likely to have Hashmito’s? And is there any advice for increasing my T3?
TSH - 8.9 (0.27-4.2)
Free T3 - 2.77 (3.1-6.8)
Free thyroxine - 16.7 (12-22)
Thyroglobulin antibodies - 37 (<115)
Thyroid Peroxide Antibodies - 120 (<34)
Specialist practitioners 
PCP or Specialist
Has anyone taken Novothyral??
Paediatric Thyroid Specialist
Should I keep pushing to see a specialist
