Positive Meeting with Endo

[Thyroidconfusion]

I hope you are all well,

Sorry this will be a longish post but I believe worth the read. Thanks for all the support I don't believe that this could have happened without the support from the great people on this forum.

I just wanted to provide an update on my wife's journey to Thyroid Health. Following tests results from a previous post we had a call with the GP and as expected due to the TSH being 0.05 he wanted to reduce her Levo from 75-50 to get TSH within range.

I suggested that it was a poor idea and that this would worsen symptoms and reduce T4 and T3 levels and that she would be under medicated. My wife did agree to reduce the dose but we caveated the decision with the statement that if the symptoms did actually get worse she would revert to 75.

As expected after only 2 weeks it became hard for my wife to function with no energy with cramps becoming debilitating. As a result she self medicated back to 75 and did another test. Results below:

Test on 3/11/22 (Monitor My Health was used to to avoid any doubts of the test credibility as done by the NHS)

TSH: 0.13, Range .27-4.2 pmol/l

T3: 16.9, Range 12-22 pmol/l

T3: 3.8, Range 3.1-6.8 pmol/l

I then correlated all her results from 2014 which where mainly TSH with the odd T3 or T4 until the end of 2019 when we regularly tested for all 3 in a single spread sheet so very simple to read and understand. I then calculated the conversion rate (using 4:1 ratio) from then to know and it was obvious that there was a conversion issue. These figures where added to the sheet. We also did a DI02 gene test which raised some conversion flags.

We then sent all the information to the GP including symptoms and result pointing out there was a conversion issues and clearly requesting a T3 trial and an Endo appointment. Also pointing out that 20 years of Levo had done nothing to resolve any Hypothyroid symptoms and it was time for a change.

As expected the GP did question the validity of the tests but had no real argument to use for not giving us an Endo referral based on the evidence. Faced with the information he had little choice but to agree.

A few weeks later we both attend the appointment with the Endo and what a surprise. In the meantime my wife had agin upped her dose to 100 and was feeling much better. The consultant was fantastic. He looked at the spread sheet we had provided and agreed with the conversion issue observation. He listened carefully to my wife's symptoms and history and she admitted to upping her dose to 100.

He stated that it was her body and as long as she understood the risk etc. he was happy to support the 100 dose. He stated that there was evidence to link bone density and heart issues with low TSH. He also agreed to a T3 trial on the basis of a bone scan to show that there where no issues with her bones. He did also say that T3 did not always resolve symptoms. I explained that we understood that but this was an obvious next step on the journey to thyroid health.

A result I was not expecting. So we are now awaiting the bone scan and hopefully a T3 trial. I will provide a further update.

I wanted to provide this update to offer hope to sufferers on this site that there are some Endos that do have your best interests at heart and are not completely driven by TSH tests. I believe the lesson from our experience is that if your prepare well, set expectations before a GP call they will not have the knowledge to argue with you.

Thanks again for all your support and have a great Christmas

PS. Is there any actual evidence of the link between low TSH and Bone Density/Heart issues?

[SarahJane1471]

that’s great news. Well done 👏

[SeasideSusie Remembering]

Excellent news and well done for the support you're giving your wife.

Sounds like a good endo. If he wasn't one from the ThyroidUK list perhaps you can pass on his name and your comments to ThyroidUK so they can add him to the list:

[e-mail]

[Thyroidconfusion in reply to SeasideSusie]

No he was not on the list. I will get his details and pass them on

[asiatic]

Whether or not low TSH is linked to heart and bone problems is controversial. Some papers suggest it is. Here is one that found low TSH levels ( 0.04) but not suppressed were OKsciencedaily.com/releases/2...

[Thyroidconfusion in reply to asiatic]

Thank You

[SeasideSusie Remembering]

Is there any actual evidence of the link between low TSH and Bone Density/Heart issues?

Most doctors think a low/suppressed TSH is going to cause osteoporosis, atrial fibrilation, etc. This has been debunked - see 7 myths of hypothyroidism on ThyroidUK's website and scroll down to

The myth that a suppressed TSH leads to Osteoporosis

thyroiduk.org/further-readi...

I have saved some old posts that touch on this subject and you might want to have a look through them.

Why we should not rely on testing just TSH:

Time for a reassessment of the treatment of hypothyroidismJohn E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

bmcendocrdisord.biomedcentr...

You might find these previous posts on the forum helpful:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Also check out posts by diogenes (click on his user name to see them 👈 ) there may be others that I haven't listed. Diogenes is Dr John Midgley, thyroid researcher and scientist who is an advisor to ThyroidUK and author/co-author of many articles about thyroid tests.

[tattybogle in reply to SeasideSusie]

also this one shows low TSH not a problem re. bones .

healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer

[Thyroidconfusion in reply to tattybogle]

Thanks

[tattybogle]

for a list of posts with useful discussions/ evidence re. low TSH / risk/ quality of life .

see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Have you tested vitamin D, folate, ferritin and B12

These need testing at least annually

Important all four vitamins are at GOOD levels for good conversion and before considering adding T3

What vitamin supplements is your wife taking

[Thyroidconfusion in reply to SlowDragon]

Thanks Slow Dragon, understood. Due for an annual check. We both take daily B12, D3 and K2 and have a meat based diet. Previous levels have been good.

[pennyannie in reply to Thyroidconfusion]

When metabolism isn't running quite right for the individual either too fast as i hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients from food no matter how well and / or how clean you eat.

It is essential to maintain ferritin, folate, B12 and vitamin D at optimal levels for any thyroid hormone replacement to work well.

I have been self medicating for some 5 years now and am much improved on NDT but I do need to supplement all of the above irrespective of my food and now just run a yearly full thyroid panel more to see where my vitamins and minerals sit than where my T3 is, as I know my brain is now engaged and I feel ok.

[Thyroidconfusion in reply to pennyannie]

Thanks, just coming up to the annual test which will happen before the next session with the consultant so we will know what the key levels are for the T3 conversation

[JaneChapple in reply to Thyroidconfusion]

Glad you had good experience with the. Consultant, but FT3 is just above bottom of range and needs to be in top half. For patients on levo TSH needs to be 1 or below and FT4 in top half third of range for most patie u ts to feel well, but we are all different and what suits one doesnt necessarily suit another. Obviously if you add T3 the FT4 and FT3 will drop lower. Hopefully your endo will be aware of this, but worth pointing out the low FT3.

Good luck!

Janexxx😩☺️❤️

[pennyannie]

Hello again :

Glad to read you feel you may have made some progress with an enlightened endocrinologist.

Was this referral through your NHS surgery and does your surgery currently prescribe T3 - Liothyronine to any patients ?

openprescribing.net and then go into analyse - there you can find by surgery and IBC/CCG area how supportive your NHS are allowed to be.

[Thyroidconfusion in reply to pennyannie]

pennyannie, my referral was through my NHS GP. Just looked at the data and my surgery is in the highest 30 % for prescribing T3. So that is positive.

[McPammy]

That’s brilliant and positive news for your wife, and yourself. Well done for finally convincing your GP and Endo she needs further help.

As for suppressed TSH and what that can cause into one’s future health I think the jury maybe out. I’m on combined treatment of levothyroxine T4 plus liothyronine T3 after years struggling like your wife I finally was prescribed T3 liothyronine also. What a huge game changer for me. I too have a positive DIO2 result. I’ve not looked back and feel youthful and energised. My TSH is not suppressed and hasn’t been since staring T3. My private and NHS Endo are very happy about this. My sister however had thyroid cancer and must have a suppressed TSH to stop any cancer returning. She is only on T4 levothyroxine. Her doses take her T4 levels very high. No Endo nor GP has ever explained to her about her suppressed TSH and what she can expect that to do to her health. She’s had her TSH suppressed now for over a decade. She does struggle with joint pains all over her body and has piled a lot of weight on too. But no Dr has diagnosed why she struggles so much. Personally I feel it’s the very high levothyroxine doses and suppressed TSH she has to live with.

[Hylda2]

ok I have an under active thyroid and a pacemaker, but have had two bad falls in the last two years and bounced quite satisfactorily

[Thyroidconfusion in reply to Hylda2]

Good to know, thanks

[Hylda2 in reply to Thyroidconfusion]

Forgot to say TSH always 0.01

[Brightness14]

Good for you and I hope your wife's good health improves. For over seven years I have a TSH of about 0.05 due to cancer and the removal of my thyroid. I have no bone or heart problems and I am 76 years old. My professor surgeon here in France directed my GP and myself to always keep a supressed TSH to stop the cancer returning. Maybe someone on here can give you the proof you require I hope so.

[Brightness14]

I forgot to say that I am self medicating on NDT.

[buddy99]

This is such good news!!! Thank you for sharing. With all the disheartening experiences, personal and shared, it makes the heart sing to hear about success, to see that all the prep work can actually sometimes lead to where we want to be. Also, thanks for supporting your wife and standing by her and up for her in tough and confusing times. This is so wonderful. ❤️

[Miffie]

A good outcome for your wife. Sadly not every endo is so willing to listen, Let’s hope the support keeps going for you both.