Dont want to sound like a hypochondriac...

Hi. Im just a bit worried that when i go back to the docs AGAIN this aft that im going to sound like a proper moaner. Im going back as, although i am feeling a bit better on 75mcg of levo(was on 50), ive still got every hypo symptom and have now started having panic attacks. The main thing is my weight. Its just going up and up. No matter what i eat or dont eat! Im going to ask to see if they wull give me some t3 as well as levo. What do any of you marvellous folks out there think.? And why suddenly am i having panic attacks? Im worried about going to docs as I kind of feel that as theres nothing to" see", i feel like im wasting their time. Thanku. Xxx

[shaws Administrator]

I understand your anxiety because doctors appear to know nothing about clinical symptoms we can have if we are underdosed.

I shall give you a list of symptoms. Tick yours off and show to GP, don't go rattling on just tell him you have taken advice from the NHS Choices for dysfunctions of the thyroid gland Thyroiduk.org.uk and it has been suggested that as well as T4 and T3 you need tests for Free T3 and Free T4 plus thyroid antibodies.

All the sensations you are having is due to low thyroid hormones (I believe and I'm not medically qualified ) and most members on this forum have had some of them. It's scary because we are taking hormone replacements and wonder why we don't feel better. In fact many feel worse. It could be due to not being on sufficient dose yet as levothyroxine has to convert to T3 which is the only Acticv thyroid hormone required in the receptor cells so we need a reasonable dose, slowly increased, until we feel much better.

You can say you know these clinical symptoms are common. Highlight them on the appropriate page and I'll also link it below.

It does take a while to build up our dose of levothyroxine to a optimum and that means we feel well.

Don't worry too much about weight gain yet as it is a common symptom too until you get to an optimum levo. You can tell doctor your FT4 and FT3 should be checked (I don't think many do but if he wont you can get your own) and they should be towards the upper part of the range plus the reason you need to know FT3 (see link).

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

thyroiduk.org.uk/tuk/about_...

Get a print-out of resuts with the ranges and post for comments.

[Hidden in reply to shaws]

Thanku so much for all of this..i was on 50mcgs of levo for around 6 yrs, then 6 wks ago was put up to 75mcgs ( my request), weight has been rising for past 6-8 yrs.

[shaws Administrator in reply to Hidden]

It's really terrible that you have been on such a low dose for six years. One doctor, now deceased, informed the Endocrinology Association that we were being given too low a dose of levo to alleviate all our symptoms and the fact that the normal doses of NDT (before blood tests and levo) was between 200 and 400. In fact too low a dose can give us more problems, i.e. weight gain is one, heart and maybe some other problems just due to too low a dose but they will give us 'other' prescriptions for the symptom rather than a decent dose of hormones.

Weight gain is a clinical symptom and quite a few members have said that their weight is now reducing/has reduced. We need an optimum dose to increase our metabolism as low metabolism enables weight to rise - no matter how little a person eats.

thyroiduk.org.uk/tuk/about_...

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

Highlight FT3 and FT4 on the above. You don't necessarily have to give both to doctor if he doesn't agree with FT3 and FT4 (some labs wont do anything other than TSH if it is somewhere in range).

You can tell him the new research has shown that a combination of T3/T4 is better for many patients.

Some labs wont do what doctor requests if TSH and T4 is in range. You can get a private tet if GP/lab wont.

[Hidden in reply to shaws]

Ive looked at the checklist, and i STILL have around 3/4 of the symptoms! Arrrgh!!!

[shaws Administrator in reply to Hidden]

I can just imagine your rage but be calm and dignified at your appointment. After all, we have to educate some doctors as they are doing what they've been told. In fact, it's the 'patient knows best....eventually.

[Hidden in reply to shaws]

Thanku. I will go later feeling better!

[SilverAvocado]

Kaytlou, you're being given great advice about the medical side by Shaws, but I just wanted to mention some doctor management

It's been my experience that what doctors send you away with us very much a starter dose. They don't actually expect you to get better, even though they act like they do. It's kind of a test. It maybe you might call it an experiment, from their persoective. The idea is that if you don't come back, you are cured, but if you do have further problems you will come back and complain again. In this way they save themselves tons of time by only giving the squeaky wheel the full treatment.

I understand your reluctance to go back, and all the bad feelings that if you haven't done well on the treatment then there's something wrong with you. But I think to get good treatment we have to lose a lot of our pride and just push through the humiliation of it.

Best practice is to be given a blood test every 6 weeks, and to have your dose adjusted each time, until you are feeling well. But you will likely have to go and make a fuss in order to get that. Similarly if you want to try T3 your best chance is to make a fuss. I've got a friend who was going in weekly to complain, and she eventually got sent to an Endocrinologist and now has T3.

[Hidden in reply to SilverAvocado]

Hi, thanks for the reply. So i went back AGAIN this aft, and saw (my fave) dr. Took my pulse. (Couldnt find it manually, had to use a machine!) Agreed at 53 bpm i was low! Also agreed i needed another blood test next wk to put levo bk up to 100mcg. Also said nhs wouldnt prescribe t3 the last time they tried with another patient. 😣🤔soooo??? What should i do about t3? Im happy that he knows im unhappy!

[SilverAvocado in reply to Hidden]

From what I've seen on the forums, it looks like many regions are tightening back on T3 so much that its impossible to get, and even some people are getting it taken off them. My friend had to get a referral to an Endo to get hers, but in the end she got it fairly easily. So it may be that the only option is to buy your own and self medicate.

But on the other hand, you've been on a really low dose of Levothyroxine for years, so it may be that you don't need T3, and will be fine when you get onto your optimal dose of Levothyroxine. If you have your blood test results you can post them in a new thread and members will comment. If you don't have them you can request a copy at your surgery, as it's your right to have them, though you may be charged printing costs.

If they didn't do a freeT3 test, which is really what you need to find out how well you're converting Levothyroxine (T4) into T3, you can get this done privately with a mail order finger prick test from Blue Horizon. This is the first step to think about self-medicating, as if you do that you'll need to source your own blood tests.

[Hidden in reply to SilverAvocado]

Ok, thankyou. Thought that might be the only option. Its so wrong that people who are suffering are not getting(or even worse, being taken off ) the meds they so clearly need due to cut backs. Makes me sad and angry.