Is there a listening endocrinologist?

What to do when at last you find a doctor who will listen and even understands but when she sends you to endocrinology and he denies everything and changes your meds so your back at square one to fight your way up the ladder again?

[SeasideSusie Remembering]

Many of us have found that seeing an endocrinologist is a backward step, mine made me extremely ill. Very often not worth bothering with. Can your GP not just treat you? Do you really need an endo?

[Hidden in reply to SeasideSusie]

She says no because my T4 is high but I'm having underactive health problems. What's the point in having specialists if they know very little about the subject.

[SeasideSusie Remembering in reply to Hidden]

Most endos are diabetes specialists, trying to find a thyroid specialist is like looking for a needle in a haystack.

Why not post your results on the forum. There is a wealth of knowledge here from experienced patients, who collectively seem to know an awful lot more than doctors.

Just because your FT4 is high doesn't mean that you can't still have symptoms. It's T3 that is the active hormone that every cell in our bodies need, so we need to have FT3 tested to see what that level is.

For a full picture we need to see results, with reference ranges (because they vary from lab to lab) for the following:

TSH

FT4

FT3

Thyroid antibodies

and because we need optimal nutrient levels for thyroid hormone to work properly we also need to test:

Vit D

B12

Folate

Ferritin

If you don't have all these results, and your GP wont test them, we do have private labs recommended by ThyroidUK who can do them all in one test bundle either by fingerprick or venous blood draw (at extra cost). Please ask if you would like details.

[Hidden in reply to SeasideSusie]

Two years ago.

TSH 0. 69. 0.27 - 4.20MU/L

T4. 20.7 12 - 22.00 MMOL/L

T3. 3.8

Six months ago

TSH 0.04. 0.27 - 4.20

T4 26.7. 12 - 22.00

No T3 results known!

[SlowDragon Administrator in reply to Hidden]

So first step is to get FULL Thyroid and vitamin testing privately

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 Thyroid antibodies are raised

when were vitamins last tested?

Do you have high antibodies?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

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

Come back with new post once you get results and ranges

[Hidden in reply to SlowDragon]

NHS Endo has asked for T4 and TSH B12 and D3 to be done in 8 weeks. Although private Endo recommended T3 the NHS Endo who read his letter said 'No way'.

[SlowDragon Administrator in reply to Hidden]

Which is why getting full Thyroid and vitamin testing privately, is forced on so many thousands of people

You obviously need TSH, FT3 and FT4. Plus BOTH TPO and TG antibodies, if not been done

Just testing B12 without folate is not adequate. Extremely common to have low ferritin too.

NHS not interested in testing FT3 because they don't want to see a low result and be forced to prescribe T3

medscape.com/viewarticle/90...

thyroidtrust.org/media-cove...

[vocalEK in reply to SlowDragon]

"The difficulty is that scientific evidence on the benefits to patients' wellbeing is inconclusive; it is possible that clinical trials to date have not been adequately designed to determine this," adds Dr Chatterjee.

The above is absolutely true, and it also may be that some trials have been purposely designed to show no benefit from T3. Here's an example: ncbi.nlm.nih.gov/pubmed/279...

Notice that instead of titrating the treatment dosage according to patient need, researchers used a one-size-fits-all approach: "Adults with primary hypothyroidism on stable doses of LT4 for ≥ 6 months (125 or 150 μg/day) were randomized to continue LT4 treatment (G1) or to start LT4/LT3 therapy (75/15 μg/day; G2)."

"CONCLUSIONS:

The combination therapy yielded significantly lower free T4 levels, with no changes in TSH or T3 levels. More patients on LT4/T3 had elevated T3 levels, with no significant alterations in the evaluated outcomes. No clear clinical benefit of the studied formulation could be observed. "

Furthermore, what were the FT3 levels BEFORE they began treatment? Logically, one would expect that patients who already had high FT3 would not benefit from extra exogenous T3 (i.e., overtreatment). In addition, it appears that they looking only at TOTAL T3, rather than FREE.

The final question is, were these researchers smart enough to know that their design was doomed to "show no effectiveness" (i.e., "fail"), or were they looking to compile evidence for their current approach to treatment for those with Low T3? If the latter, shame on them for their total disregard for patient welfare.

Here's a link to the full text: scielo.br/scielo.php?script...

[Hidden]

This is internal politics where you go round in circles. If you had a test recently did you have a print out? You can ask the practice manager for a print out and if your test was over six months ago it is out of date. You can send the test results back to the website for their comment. As there are cuts you have to have a prescription for t3 and and only t4 is given . If you did not have the full test done then information from your existing test will confirm if this is accurate. Take care.

[DippyDame]

thyroiduk.org/tuk/testing/p...

Your high FT4 may be the result of poor conversion but to conclude that we need an FT3 result.

High FT4 with low FT3 indicates poor conversion.

Medics do not now routinely test FT3 which is why many of us have private tests done....link above.

Sadly most medics have very little knowledge (or training) about thyroid disease...if it were otherwise this forum would not exist!

Following advice from members I now self medicate....I'm not a fan of endos in general.

Seaside Susie has offered you excellent advice...as always. If we have up-to-date results (in a new post) members can begin to advise on a way forward.

Good luck

DD

[MissGrace]

‘Although private Endo recommended T3 the NHS Endo who read his letter said 'No way'.

I wonder why - because it might highlight a conversion issue and he might have to follow the guidelines and give you a T3 trial maybe?

This is despicable behaviour from a so-called expert. As soon as he said ‘no way’ to T3 testing, I would have taken the letter back and said ‘Well no way do I want my health in your hands then.’ and left as fast as my hypo legs would carry me. 🤸🏿‍♀️🥛

[Benos123]

Hi, At all times, just remember what the difference is between God and an endocrinologist.

"GOD DOESN'T MAKE OUT TO BE AN ENDOCRINOLOGIST"

[HMBradley53]

I went through all of that going to an Endo. I ended up switching my PCP and he is very good and will test what ever I want. My Endo wouldnt even test T4 and they charge insurance companies 300.00 for a visit. I hope you get this resolved.

[Knackeredoldhag]

I spent 3 years under the local NHS endo department, every 3-6 months - they weighed me and took my BP (they are obsessed with high BP).

Every time I went, the clinic was packed and I would wait over an hour to be seen. Then I would go in, see a different person each time, they would spend a couple of seconds looking at the current blood test result then suggest lowering, upping, or coming off thyroxin altogether (because TSH was 4.98 (UK NHS range).

They only looked at TSH & BP.

I never spent more than five minutes in any consultation, they were just too busy.

My results tended to go up and down a lot, but they tended to blame me for not taking my meds properly (I did!) and denied that TSH fluctuated because of the Hashimotos (which they had diagnosed after I developed a large goitre & had a hemithyroidectomy).

I was thankfully discharged earlier this year, I now self medicate as and when I feel I need more, or less thyroxin, and I feel much happier about it.

On my last appointment, the endo left the room to check with someone about discharging me, and I was able to take a sneaky photo of all my blood test results for the last three years that we’re up on the computer screen - first time I had seen them!

If I can upload the photo, I will, because it’s interesting how much the TSH fluctuates, but they were in denial that Hashis could cause this..☹️

Totally agree, NHS endocrinologists are not the best for Thyroid problems!

[salmanc1]

May I also add that your Selenium may be low, this contributes to the conversion of T4 to T3 and studies show even 2-3 Brazil nuts a day can help with conversion and increase energy levels over 6 months. Stress, cortisol and others may be off aswell so take advice above as first line.

[SeasideSusie Remembering in reply to salmanc1]

Selenium may be low, this contributes to the conversion of T4 to T3 and studies show even 2-3 Brazil nuts a day can help

Only if the nuts have been grown in selenium rich soil and it would have to say this on the pack. Even better it would need to say where they were grown as selenium content varies widely even in areas where the soil contains selenium

honey-guide.com/2012/11/19/...

Other than that, the only way to know how much selenium you are getting is to use a good quality supplement.

[salmanc1 in reply to SeasideSusie]

Good call Susie , you need to write a book! I’ve found Brazil nuts have been extremely beneficial to me, just standard amazon bought but perhaps with your post it may be a placebo affect

[Hidden in reply to salmanc1]

I also eat nuts and I take all kinds of supplements meant to strengthen thyroid activities. Been looking for answers outside NHS for a long time. It's great to have found this group! X

[salmanc1 in reply to Hidden]

NHS will only have a set criteria that they work inside ! I have 4 docs in my immediate family and you can imagine the rows we have ! Thyroid is one of those issues like Diabetes that needs careful care and attention to patient individual needs and the NHS just simply do not have the funding to give you more time to investigate. Groups like this one are a Godsend and help immensely !

[Sedum]

Specialised to the point of insanity in my experience.. no idea of the interconnectedness of the body.