Amusing Endo Appointment

[Jodypody]

Just that really. Comments like if your TSH is surpressed your risking osteoporosis and heart disease. Saying that it's better to have your T3 at the lower end of the range. Really????? I'm not sure that's necessarily true I said we used to be dosed according to the way we feel not lab results blah blah. Oh and ferritin level of 52 whilst supplementing was fine 🙄. Oh! I said I understood 80 was better for a female? Blank look. I'm quite well read on the subject I said. What have you read he asked. Dr Toft? Que silence. Ha. Just sayin. I didn't dare tell him I supplemented my dose privately as I know damn well they would not be impressed. I think they'd spontaneously combust right there. 😀

[SlowDragon Administrator]

Here's some research to give them next visit......suppressed TSH due to thyroid replacement hormone (provided FT3 and FT4 are within range) does NOT cause osteoporosis

ncbi.nlm.nih.gov/pubmed/825...

[Jodypody in reply to SlowDragon]

Thanks for that. They are ridiculously ill informed

[Judithdalston]

Not so amusing though...if you didn't know your stuff, you'd have been stuffed!

[Jodypody in reply to Judithdalston]

That's down to the fantastic support on here. It's been a lifeline

[jimh111]

The Grant study is not very good (I don't have the full paper), it measures just one site and doesn't state the age of the participants or how long they have been on suppressive therapy. They go on to speculate that the small loss of bone density is unlikely to be of clinical significance rather than putting it to the test. This study academic.oup.com/jcem/artic... led by Graham Leese found an increased fracture risk (about twice as high) in patients with a suppressed TSH or a high TSH (see Table 2). They also found cardiovascular risk. We should note that the patients in these studies tend to receive 'conventional' treatment where attention is often paid to blood tests rather than signs and symptoms. Perhaps the risks are lower in patients who unequivocally need a suppressed TSH to overcome residual hypothyroidism.

These studies relate to levothyroxine only therapy, it may be that the risks are higher in patinets on L-T3 or NDT as the protective effects of deiodinase are bypassed. What to do? It makes sense to be on the lowest effective dose. Many of us have and need a suppressed TSH so the best approach is to mitigate these risks with exercise and good diet. Many treatments carry risks, the best approach is to accept them and take what steps we can to reduce the risks.

A ferritin level of 52 is fine, middle of the range for the female population, see Table 4.7, page 66 of webarchive.nationalarchives... .

Your endocrinologist is correct on three out of four points. A suppressed TSH is associated with risk of osteoporosis, heart problems and a ferritin of 52 is fine. Saying fT3 should be in the lower half of the reference interval is a bit weird, even if the patient is on levothyroxine only therapy.

[Jodypody in reply to jimh111]

Thankfully I do a lot of heavy lifting and am quite muscular (even if I do say so myself 😀) I look after my heart with HIIT training and a strict diet. I can't do anything else. I can't cope on lower doses and am on NDT

[humanbean in reply to jimh111]

My mother had a non-suppressed, in-range TSH, took Levo for 30 years, never questioned her doctors, was kept on the same dose (75mcg per day) of Levo the entire time she was on it, was compliant with standard hypothyroidism treatment, and yet was clearly hypothyroid despite treatment for many, many years.

Her bones were in such poor condition that, although she desperately needed new hips she was told her bones were too weak and she couldn't have them. The vertebrae in her spine were crumbling and she spent the last 15 years of her life with at least one broken vertebra, and eventually had at least 3. She got no treatment specifically for the spinal fractures - again because her bones were just too weak, but she got standard treatment for osteoporosis that gave her necrosis of the jaw, so she lost all her teeth.

With that as my model for what standard hypothyroidism treatment (NHS-style) does, I'd rather treat myself, and take my own risks.

Edit : And my mother had spent her entire life being active and doing heavy lifting, until she could no longer keep it up in her late 60s.

[Baobabs in reply to humanbean]

OMG, just recently been given an injection for Osteoporosis and read horrific side effects afterwards including jaw rot as you describe. My Endo is obsessed with suppressed TSH. I think the many years I had a TSH of nearly 7 ( this went ignored by my doctor) couldn't have helped my weakening bones. I couldn't exercise due to pain, weakness and fatigue. I'm with you humanbean in that I've always had a good diet, even better now and since T3 treatment am back doing weight bearing/running exercise at the gym. To hell with my suppressed TSH and the poisonous injections. I'm looking after myself from now on and if it all goes pear shaped I've no one else to blame but myself. I have zilch faith in the medical profession and I feel justified in stating this following my shockingly poor treatment of Hashi's.

[Angel_of_the_North in reply to Baobabs]

It amazes me that, after all the ranting years ago about poor Victorian match girls and phossy jaw, doctors will happily prescribe phosphorous for osteoporosis. Makes no sense.

[trelemorele in reply to humanbean]

Good Lord, that's awful!

Thanks for sharing your mum's story.

That's something to learn from

[Jodypody in reply to humanbean]

Like you I'm happy to trust that self dosing and trusting my own instinct will keep me on the right path

[Jodypody in reply to jimh111]

You may want to read Slowdragons take on this as per above post she's admin by the way.

[Hidden in reply to jimh111]

Are you a Virgo Jim?

[jimh111 in reply to Hidden]

No! Don't do astrology. As new and better research is at last coming along we need to be more accurate, especially when dealing with doctors. Up until now we have had to rely on a practical approach and use 'trial and error' in our treatment - which is appropriate when there is nothing better. Endocrinologists are awful scientists, they lack logic and precision. For example, the reliance on TSH without even checking that the TSH is consistent with the fT3, fT4 levels - that the axis is functioning reasonably correctly. Another example is when a patient exhibits unequivocal signs and symptoms of hypothyroidism and they respond to thyroid hormone, the patient is hypothyroid regardless of blood hormone levels. The challenge is to find out why.

We can carry on with pragmatic treatments that sometimes work and may have adverse effects that we are unaware of or ignore but I feel it's time we discovered the underlying causes and effective treatments. There's a need to move the science on. Unfortunately we get a lot of incorrect information from both sides, from endocrinologists and from 'alternative' physicians - with the poor patient stuck in the middle. I know it's a pain but we need to dispense with myths such as lowish ferritin levels prevent deiodinase or that you can't be hypothyroid with a normal TSH.

I've just realised I'm drifting away from the original topic.

[Hidden in reply to jimh111]

Keep on drifting jimh111

[Baobabs]

Yes, I've had all that rubbish. What are they reading? The Beano? It would be hilarious if it wasn't so sad. You have a good sense of humour and this will certainly carry you to better days.

[SlowDragon Administrator]

For many of us, if TSH is in range, we don't have energy to get off sofa, let alone do any exercise.

Not being active is terrible for bone health, as is low vitamin D and low magnesium

[jimh111 in reply to SlowDragon]

Exactly, high TSH, suppressed TSH, clinical hypothyroidism are all bad for bones as are other hormonal problems including vit D deficiency. The point I'm making is that you acknowledge the risks and do what you can to mitigate them rather than denying they exist. If an endocrinologist raises the point about a suppressed TSH being associated with bone loss ask them about the risks of clinical hypothyrodism, effects on the cardio vascular system, elevated cholesterol, how they plan to tackle these issues. I feel this is better than denying something they say that is correct, which leads to the patient's concerns being dismissed. We need to get them to start thinking and assessing relative risks of different options.

[Jodypody in reply to jimh111]

That's a really good point the issue with most is they would rather work within those parameters as there's too much at stake. My consultant also put on the record the consultation started at 9.35 when I know I was stilll sat waiting at 9.45. A minor point but an indication as to what they're up against

[SlowDragon Administrator]

When they are pushing statins, they don't explain it increases risk of Diabetes

express.co.uk/life-style/he...

[Hidden]

Your brave I never visit the GP or Endos just self medicate.

If it wasn't so serious it would be hilarious!

Perhaps it is hilarious after all.

[Angel_of_the_North]

Well, logic says that if you are too tired to do any weight bearing exercise (because our frees are too low) you'll end up with osteoporosis.

[penny]

I look at it this way...if my tsh is too low and I risk osteoporosis but I am able to function, I am happy to risk osteoporosis as the alternative is too dire. When there is an alternative I’d be happy to hear about it.