I hope you can help as I’m in a pretty desperate place. I have had under active thyroid since I was in my early teens and for the last few years (I’m in my mid-thirties) have been taking natural desiccated thyroid, which has been a true life-saver as I was very poorly for years on levothyroxine. However, in my recent annual tests my new endo has told me I’m over-medicated as my TSH is outside the normal range (it’s close to 0). When consulted by a great endocrinologist before this, this wasn’t a problem, as all my other thyroid hormone levels were great (everything had been tested each year for several years) and I was feeling good. I no longer have access to the amazing endo and struggle to know what to do - the last (new) endo I spoke was concerned about osteoporosis etc. and recommended lowering the dose of NDT because of the TSH levels.
The other thing is that in the last couple of years years I’ve also had worsening PMS symptoms and have recently realised I may be suffering from PMDD given the severity of mental health symptoms (anxiety, lack of focus, neurotic thoughts, anger and bouts of depression) and fatigue, all that match my period cycle. It’s an intense rollercoaster every month with only 10 good days most months!
Randomly I’m also loosing hand grip power and often having limp hands, finding it difficult to open bottles or even hold up a paperback book open with one hand.
I’d love to understand if these things might be related, if they are because of thyroid issues or PMDD, and what the best course of action would be. To lower the thyroid dose and seeing what happens? Going to a doctor about PMS/PMDD to see if this can be diagnosed?
I feel confused and hopeless with the way I feel and the lack of stability in my life.
Thank you so much for your help and any thoughts you can share.
Purple x
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PastelOak
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have your fT4 / fT3 levels changed from when you felt well. ? i think that's the place to start looking for decision about whether to try a reduced dose or not.
Hey thank you for your comment! No, I haven’t actually had any new tests for over a year now, my appointments were postponed due to COVID. They were looking at my old results and only commenting on TSH.
mmm .. well that's just not good enough... they can't tell much at all from just looking at TSH ,, particularly if you're taking anything with T3 in it.. They really need to look at fT4 and fT3 levels TOGETHER with TSH to see anything useful.
and no Endo on earth can tell anything at all (re. what current levels might indicate in relation to symptoms, and if a reduction may help ) from one year old results .... lol ... you could have died in the meantime ...
Ask endo to kindly do a blood test before guessing what to do with your dose .... he's not being paid to guess... you could do that yourself.
Or get a private finger prick test done from those recommended often on here... doesn't have to be expensive , basic fT4/3/TSH can be less than £30 from NHS'monitor my health'... but might be good idea to get vitamins tested too to see what's going on there.
Replies from SlowDragon / SeasideSusie (admins) will have all the info on where /what vitamins to test for.
**Edit .. see SeasideSusie's first couple of replies on this thread for relevent vitamin test info :-
P.s on the subject od PMDD.. i saved this post from a few weeks ago .. somewhere in it there is a link to a really helpful webpage on PMDD which may interest you. healthunlocked.com/thyroidu... also found MIND had a helpful site for dealing with PMDD
I'd try and make sure your thyroid levels are Ok first before going to see anyone about PMDD.. from what i can gather so far , it's not like they know of an effective way to treat PMDD anyway.. 'treatment' seems to go SSRI's / try different hormonal contraception / hysterectomy after years but only if they really really can't help any other way. Possibly some options to try bio-identical Progestrogen for some day's of cycle.. but i don't know if you have to see private gynae fore that.
I have read reports of PMDD getting worse over time.
But anyway post the previous few TSH/fT4/fT3 results [with ranges] you have with dose NDT at the time of test , and people will be able to offer more help to see if you're getting the best out of thyroid treament, and optimising vitamins/minerals (some PMDD info suggests Vit B6 may help, but need to be careful as too much B6 can cause harm. . Also read studies suggesting Calcium Supplement can help PMDD but again , need to be very careful and do own research as it doesn't mix well with thyroid hormone's... reduces absorption of Levo so probably same for NDT ?
Hi, read your post and had to reply. I have/am facing similar issues to you. Diagnosed with under active thyroid as late teen and for last 6 months have not felt myself at all! Felt dreadful to be honest.
In March I had had enough and someone on the forum recommended an Endocrinologist. He looked at my bloods an explained how low many vitamin levels are. He also discussed possibility of polycystic ovaries. I am having blood tests soon so it’s an ongoing investigation.
I am also pushing for b12 injections as I have have had thyroid scan and discovered Hashimotos. No one in 20 years mentioned it until I found this forum.
This forum has been incredibly helpful and made me realise that I not been well informed over the last 20 years but at least now I am.
Just wanted to say that you are not alone facing these issues as sometimes it can feel like you are. GP made me feel like I was anxious and I simply wasn’t having it!!!!
I think they treat women dreadfully and assume it’s anxiety when actually people are unwell.
Advice regarding vitamins is a great place to start on this forum.
It is not unacceptable to base your dose today on results that are over a year old.
It is not acceptable to base your dose on TSH alone once you are on thyroid meds [and particularly if you take meds with T3 in them]
It follows that anyone wanting to change the dose of someone taking NDT based on an ancient TSH-only blood result is a blithering idiot
Having said that, it would be worth asking for a dexa bone scan so you can show this GP (and you) the current state of your bones - and have this as a benchmark for the future if they throw the "if we give you the meds that you need you'll get osteoporosis" line at you again in the future. Good luck x
Hi everyone, thank you for your incredibly helpful and supportive replies! I’ve now had three calls with my GP about getting some new blood tests done, but annoyingly they have told me that their lab will not be able to analyse T3 at the moment (!) - only T4 ad TSH. The receptionist did not know the reason but assumed this was due to COVID and only the ‘most critical’ tests being done. This is super annoying as I feel I really need to know the full health of my thyroid health before considering changing doses. What are your thoughts? Has anyone else bumped in this absurd scenario? Thinking of taking more tests (free T3 and free T4) privately if I can, but I know they are super expensive and I’m gutted I no longer have the support of my wonderful old endo behind me.
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