Still trying to find out what is going on with my boyfriend John.   We are going round and round in circles seeing so many specialists/consultants for all manner of ailments.    We are now waiting on a diagnosis of P.O.T's although we know it is his thyroid.   Can I ask please if anybody has been diagnosed with POT's and if so, were they also diagnosed with thyroid, and what came first?

Thank you

12 Replies

  • Sorry cannot help with your questions.  Isn't POTS also associated with adrenals ?

  • Margo,

    I fitted the criteria for POTS but didn't persue investigations as balanced thyroid meds sorted a few of my issues and recovering adrenals have improved the rest.

    There are obviously some who genuinely suffer this unfortunate condition but for many I think it a label for something the doctors can't identify. Particularly those whose thyroid hormones are under performing ( for whatever reason) but test results show the doctors a happy in-range result.

    There are certain tests and a tilt-table exercise to supposedly prove the POTS diagnosis and I know I would have failed miserably so getting an untrue diagnosis had I pursued that path as couldn't stand up a year ago. Now all balance issues have improved to the point of nearly gone. 

    Thyroid hormones have made me pysically back to how I should be ....  unfortunately  my head is another matter  ( LOL ) ..   but that's another story and "things" are improving all the time in this area too.

    Be careful of being falsely labelled because all symptoms will be blamed on this diagnosis and John may have troubles getting any further investigations.

  • Interesting reply Radd, you are right John is booked for a tilt table test and others, and then a consultation with a POT's Consultant in London in June as recommended by his (and my) Endo).    I agree with you, John's numbers fit the criteria so of course it isn't thyroid, when all his symptoms scream "thyroid".   Also Dr. P said it was thyroid.....

    Excellent news that you are so much better, I remember how poorly you were for a long time.  

    Will tread carefully re. any POT's diagnosis, and may just crack on with some N.D.T.

    Thanks again Radd

  • I have a POTS diagnosis via a tilt table test, and am given a drug called midodrine and salt tablets to increase my low blood pressure that plummets on standing. I also have a tsh of 3.5 and thyroid disease runs heavily in my family. I am unmedicated for thyroid as they say its normal but I do wonder if the thyroid is causing this. My ankles are very puffy and I have a lot of thyroid symptoms. 

  • pinkjess, 

    Sorry to hear you have these health issues. Why don't you increase your thyroid meds as a TSH of 3.5 is high ? 

    Many of the symptoms of POTS and hypothyroidism may cross over making it difficult to establish what is causing what.

    Many members function better with a TSH around 1.0 and low thyroid symptoms can be seen in many different forms. Only by optimising your thyroid hormones together with any iron//nutrient//cortisol deficiencies will you be able to eliminate any misdiagnosis'.

    Low thyroid hormone gave me huge balance issues and weird head seizures. Today both of these symptoms have been resolved. 

  • Pinkjess17  I agree with everything Radd has said, why don't you up your thyroid meds' your TSH is too high at 3.5.

  • Thanks for the comments. I'm unmedicated at the moment as NHS wont treat me with normal tsh. They've given me cfs and pots diagnosis so far for the last year. I've tried ndt but couldn't seem to tolerate it past 1 grain and felt progressively worse. Maybe t4 only may suite me. My ferritin was 38ug (10-322) last time it was tested so working on that at the moment with gentle iron and ferrous fumerate.  My saliva cortisol was ok- normal all four times, so all I can think is its either thyroid issues or nerve damage in the legs from low B12. I had pins and needles, numbness in the legs and sciatica for years but doctors said not from b12. It was 240ng (200-900) when I decided to self medicate with jarrows b12 and its now 838ng. I can't see my achilles tendon at all from the fluid which I think must be connected, and have white patches on lower legs from poor circulation. I'm 30 but feel 90 and had to give up my job recently. Given up with the doctors now, am so thankful for sites and people on here helping others out of this nightmare. 

  • pinkjess, 

    A small subset of people can only tolerate thyroid hormone replacement when iron, all nutrients and cortisol are optimal. 

    It may not have been the NDT that was wrong but your iron & Vit B12 deficiencies.

    I have not medicated NDT but read that a combo of synthetic T4 & T3 are tolerated slightly easier by that subset when such deficiencies are evident.


  • Thanks Radd, that was a good article. I definitely feel better since increasing the iron, I seem to not crash as much after activity which is great. I find vit d also helps imenseley with my sleep patterns. I'll try out Thiroyd again when my iron and co factors are corrected. Many thanks for your advice, it's hard trying to work it all out on your own.

  • Just wanted to say pinkjess17, when I first took N.D.T. I couldn't tolerate it.    However 3 years on, I am managing ok I'm Naturethroid.    

  • Hi Margo have you had any progress with this? I have the tilt table in a week. I stumbled upon it after thyroid - could be unrelated. A few months at desirable thyroid levels has not helped the pots'. Now I wonder if long term tachycardia may have caused thyroid to downregulate'. After the ttt I want to come off ndt as it raises my liver enzymes and see if I can move with pots . I have idiopathic low tsh t three and four so I don't know how to heal it but maybe getting rid of tachy will help.

    What progress have you made?Take care

  • Thanks for asking 108Optimist the short answer is no progress, (long story). We are still waiting the POT's possible diagnosis.

    Good luck I hope you find the answers.

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