T3/T4 trial follow up Endo appointment - help!

[tj61]

Hi everyone, sorry this may be a long rant again

I have just come back from my appointment with the endo who says he will look after me the same as he would his family...

I do not know what to do next; he was initially talking about withdrawing the T3 because I hadn't had a big improvement from 20mcg daily. His argument was based on my TSH - the T3 has caused it to drop by .01 to 0.03 and he said I was at risk of heart and bone problems. I asked if he would consider doing baseline measurements of heart and bone density and monitoring from there but of course he wasn't about to do that. He was patronising and "took exception" to me saying I am an individual and shouldn't be treated by numbers, but by symptoms. He again told me I should realise I was lucky to see him as half the endocrinologists in Scotland wouldn't even consider a trial of T3. I pointed out that whilst we don't know what my T3 level is, my T4 has decreased to 13.2 (9.0 - 21.0) but he just isn't interested.

He said again that he doesn't believe my symptoms are from my thyroid but couldn't suggest testing for anything other than the tests already done for Addisons, Coeliac and one other hormonal condition I've forgotten.

He agreed that it didn't make sense to put someone on a trial of T3 and then not test the level at next blood test, so he says he will ask the GP to do that - he also agreed that it wasn't unreasonable to test my vitamin and mineral levels but disagreed that I would get a temporary boost from Vitamin D supplementing.

He was very dismissive of patient support groups and refused to discuss any information I had from here - basically because he has the formula and is not interested in discussing it with the person it affects! He asked me very patronisingly if I knew what TSH was and what I'd expect to happen to it if I started thyroid meds - my brain fog stopped me from making the point I was trying to, that surely you can't expect the body to work the same once you are synthetically replacing hormones for parts that are broken.

I feel it was a complete waste of time and that he is not adhering to NHS guidelines of working with the patient - he was very challenged and annoyed by my having an opinion on my treatment options. Meanwhile my symptoms are back with a vengeance and I feel really poorly; I don't know if this is the result of a flare or because my T4 is low or what else it may be.

I feel like a child who is expected to do what the parent in charge dictates, regardless of how that leaves me feeling, and I really don't know what to do next. Suggestions?

[beh1]

I notice that you were on 150mcg of levothyroxine and endo changed this to 75mcg levothyroxine and 20mcg liothyronine. As some feel that the liothyronine is about 3x levothyroxine, this would mean he’s reduced your dose by about 15mcg levothyroxine a day. I realise your tsh has gone down but this is to be expected on liothyronine. (My tsh is 0.01 and my endo seems fine and dismissed it when I mentioned heart and bones and she just looks at t4 and t3 levels and asks if I feel well).

Anyway, you could benefit from a little increase in your levothyroxine but good luck persuading that particular endo.

[tj61 in reply to beh1]

Hi beh 1, yes I felt under replaced so asked for the referral & T3 and feel I've changed one under replaced dosage for another. I don't want to see him ever again and struggled to remain polite to him as he bristled and scolded me for disagreeing with him - he even made a veiled threat to withdraw the T3 at one point! When I said to him you'd expect TSH to be suppressed on T3 he disagreed and said if the dosage was right I'd have normal TSH - wonder what he thought he was going to do to obtain his required number!

[jgelliss in reply to tj61]

This Dr needs a refresh in medical school . I wouldn't argue with a Dr that Doesn't Get It . I would start looking for a new Dr that partners in my wellbeing and *Gets IT* .

[tj61 in reply to jgelliss]

Hi jgellis, I'm afraid he was my only option here - not sure if I can request a referral elsewhere but within the NHS the endos I've seen all sing from the same hymn sheet

[jgelliss in reply to tj61]

I'm praying for your success that your Dr comes through for you . It's a Shame that we have to fight for something that should be a natural script for our wellbeing . There is something very wrong with our system . Yet Dr's are very fast to give scripts for anti depressants , blood pressure pills , sleeping pills etc. Something is so very wrong with this practice .

[NWA6]

😩 That was a complete and utter waste of your time! I have a lot of sweary words coming from my mouth as I read your post #%^*$!

He halved your Levo and replaced it with only 20mcg of T3 without even knowing what your T4/3 was? I don’t even think that Levo should be decreased when adding T3. I think T3 is a top up, there’s no point taking away unless your FT4 is over range.

I can’t even 😩 Please just look for someone else.

[tj61 in reply to NWA6]

Thanks Paula6, I'm feeling disempowered and pretty upset about all this. I've gone backwards & forwards to different GPs and endos for years and been palmed off, with no one willing to explain why someone who they say is being optimally treated still has all the symptoms of hypothyroidism. I've now developed what I think is carpal tunnel syndrome.

In March my TSH went down to <0.01 (0.35-5.00) & FT4 increased to 28.1 (9.0-21.0) and I got a call from the surgery to say Dr wants you to cut your T4. I refused and went to see my GP and said I needed a referral to endo again. In April my results were TSH 0.05, T4 18.8 (ranges as above) & T3 1.4 (0.9-2.5), then the endo cut my 150mcg T4 to 75mcg and added 20mcg T3. My most recent bloods were TSH 0.03 & T4 13.2 (ranges as above) and T3 untested. I've always found I feel a little better at the top of the FT4 range. I don't know if anyone can suggest what the results might mean, but I'd really appreciate any pointers towards treatment that may help.

[NWA6 in reply to tj61]

It looks quite simple to me. Your Levo should never have been halved if it should even have been cut at all. I know others recommend dropping Levo by 25mcg when starting T3 but I really don’t think that is necessary in all or any cases. And not doing a T3 test when Liothyronine has been started is just negligent 😩

If it were me I’d get back on 150mcg and add 10-15mcg T3 per day. Spilt into 3 doses. Your FT3 before treatment was only about 30% so you definitely have conversion issues. Then you can increase T3 in accordance with symptoms and blood tests to reassure you that what you are feeling is true.

There’s a big difference in your FT4 in March and April. Yet you didn’t change dose? So I’d query that! But I’m going on the April FT4 result of 18.8, that would be a good starting point to add T3 to.

And don’t even worry about what your TSH is, just disregard it.

Can you get private blood tests done and then just set about self medicating? Just stop all this stress which will only exacerbate your symptoms and Thyriod distress.

I am just so so sorry that you (We) have to put up with this, it’s so frustrating and upsetting 😢

[tj61 in reply to NWA6]

I really appreciate you taking the time to help - it is so upsetting to be disregarded by the people who we are supposed to be able to rely on to help us. On reflection, I feel that guy bullied me today and I am considering whether I should make a complaint. Can you reiterate for me why we don't need to think about TSH? That guy today kept saying if it's suppressed there must be too much T4 in the system and he continued that argument regardless of what I said and then the fog rolled in (probably from stress) and I lost my track.

I have been unable to work for 6 years now so money is very tight - can you give me an idea of how much self-medicating costs? I'm not at all sure I can afford to do private testing and getting my own meds but I'd do it in a heartbeat if I could afford it. I keep saying to all these smug doctors that all I'm asking is to feel well.

I forgot to say; I was still on 150mcg T4 when the blip happened in March - I do remember feeling terrible at that time.

[NWA6 in reply to tj61]

We don’t need to obsess about TSH once we start replacement therapy because we are interfering with the natural order of things and TSH can no longer be a good indicator of our thyroid condition, esp so when a person has conversion issues.

When you go over range with your FT4 result THEN you firmly say you have too much Levo in your system. But actually one could be at the top end of the range and that be too much for you, it’s a subjective topic, what’s too much for you may not be enough for me. What you need to concentrate on is keeping your FT4 result around the 18-20 mark. Add T3 and get your FT3 result higher and find the balance that works for you.

These clinicians are trying to make it clinical, trying to work to a number because they are scared of getting it wrong and they do not trust their patients to tell them the truth. WE do tell the truth but they just don’t understand how this little butterfly in our throats could cause so much chaos!

As far as private testing goes. Medichecks for example has a test for £39. You post your results here and people can guide you as to what they mean. You continue to get your Levo/t3 from NHS and then top it up with what you actually need. If or when you’d like to work out costs you can ask members for a private message for websites where they get there’s.

It may very well be financially tricky for you to initiate some private care but it’ll pay off in the long term when you feel better and can look to the future with life and jobs.

[shaws]

Maybe Endo should read the following:-

thyroiduk.org.uk/tuk/thyroi...

This is an extract from link below:-

"TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH willnecessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

If you cannot obtain the sex-hormone, thyroid, or adrenal care from your primary care physician, call local compounding pharmaices to see if they know of a physician that provides such care. If you cannot obtain such care locally, consider going to a Holtorf Medical Group clinic (See website). Fortunately there is a clinic in the Philadelphia area.

hormonerestoration.com/

[TSH110]

Thank god you are not a member of his family and see someone else from the ThyroidUK list. He sounds absolutely awful

[tj61]

Thank you everyone who took the time to reply, it means a lot to know other people understand your situation and are prepared to help

[serenfach]

I feel sorry for his family! Hug.

[shaws]

Unfortunately for us, few endocrinologists are knowledgeable about the prescribing of T3. That's why the majority on this forum who take or add T3 'do it themselves'.

However, there was a video of the Scottish Parliament who led the way forward so that it was resolved that if patients needed NDT or T3 in place of levothyroxine, it should be prescribed. You could contact Elaine Smith (who herself takes T3 (I believe).

thyroidtrust.org/scottish-p...

[tj61 in reply to shaws]

Yes, it has been my experience that Endocrinologists are not experts in thyroid disease and treat it like a minor complaint. I think the problem I'm left with now is not how to get T3 because he left the prescription standing, but that I am now about 50mcg a day short on T4! I mentioned previously that I had thought taking VitD had given me a temporary boost, but I now think it may have been the combination of T3 added to the higher dose of T4 left in my system, along with VitD. I am waiting to be called for a blood test requested by the endo to check T3 and maybe vitamin/mineral levels and then I think I will book a longer appointment with a GP and see where I go from there. The idea of being able to function enough to just think clearly and go out more than once a week is keeping me going, but I feel a long way away from be able to go back to work, which is my major objective.

[shaws in reply to tj61]

The following link may be helpful:

naturalthyroidsolutions.com...

It was by an Adviser to Thyroiduk and he only took one blood test for the initital diagnosis and thereafter it was all about 'how the patient felt' on a particular dose which was slowly increased until patient was symptom-free. That's the aim of thyroid hormone replacement, instead of doctors believing that as long as the TSH is somewhere in the range that we're on a sufficient dose.

[jgelliss]

What a shame that we have to do loops to feel our Optimal .Will it ever stop ??? I would look for a Dr that is a great listener and understands how to dose with T3/NDT/T4 . And *Gets It* .

Best Wishes .

[tj61 in reply to jgelliss]

Thanks so much jgelliss I have been having these upsetting episodes for the past 13 years - I go through a phase of thinking "no, I'm not putting up with being kept ill" and go to GP asking different things and then, when I get fobbed off, run out of energy and subside back into brain fog and illness and struggle on. But this time I feel I'm going to pursue it to its end and regain something that resembles a life - thanks so much to all on here for their insights, info sharing and kindness

[jgelliss in reply to tj61]

Strength and Prayers For Your Outmost Success for Your Well-being. . No One should ever have to fight with Dr's to Feel their *Optimal* .