My visit to the Rheumatologist..OMG!!!

When the doctor allowed me to say a few words, here and there, i explained that my symptoms of pain, started with the onset of a rapid weight gain and severe insomnia at the same time diagnoses with  Pituitary damage, abnormally low Cortisol results and Hashimoto's Disease.  I had not been properly evaluated for other missing hormones because a regular Endo does not know how to order proper tests. I explained i had been to 4 Endo's already looking for help.   I was diagnosed today with  Chronic Fatigue Syndrome and Fibromyalgia!  She explained to me that low or missing hormones would in no way cause muscle pain or swelling in my skin!!  I then was told i did not need a specialist in Pituitary disease, that an Endocrinologist and good General Practitioner were all i needed.     I was  then referred to Endo number 5.  I was given Lyrica and told to exercise.

To someone who doesn't know better..they would believe this BS!!  I was literally stunned.  It all so flies in the face,  of all Dr. Lowe found during his research.  I truly believed that they were more educated than this!  Would you believe this doctor is on a list that i obtained from an Integrative Medicine doctor!!!  WTF??!!!  I literally felt like i was in the Twilight Zone Today!!

11 Replies

  • I've seen a (UK) private rheumatologist back in January, ...he was so butcher like and rude and didn't seem to have much time to listen either.  How in less than 20mins, without blood tests and a rapid body check he reached a diagnosis of osteoarthritis, discarded rheumatoid arthritis and didn't give me a follow up. ..told me to cancel my carpal tunnel surgery  (which I ignored and I had my op 27th of same month )... Sent me for an ultrasound of my feet to search for "Morton's neuroma " as possible cause of my feet shooting pains/tingling /numbness and to come back for quarterly cortisone injections for the pain and inflammation, despite the fact that my bloods showed pre-diabetic levels and a strong family history of diabetes?  

    Had I not had a morning appointment that same day at the NHS pain management clinic, with a sympathetic female consultant who sent me for a FTF and other mri tests, I would have burst into tears. 

    Still, a month later, in Feb, despite my pain management clinic ordering it early Jan, the NHS phlebotomy lab refused to test my FTF due to a "normal" TSH... 

    Some days later, starting to question my own sanity after 5 months of bone/muscle /joint pains inflammation, fatigue, brain fog, carpal tunnel, tinnitus, etc and  due to many doctors ignorance and inability to listen, I pushed my GP and demanded a private referral to an endocrinologist solely based on my continued symptoms and a family history of hypothyroidism on all female relatives on my dad's side. 

    Ah yes! Even my own daughter, who's a medic, paediatrician, told me off for "over medicalising my symptoms "!? Well...I agreed to disagree based on the fact she was not in my body and suffering the pain and diminished quality of life. ...Grrr! 

    Finally, a month ago, 21st March 2016, endo FTF and bloods showed without a doubt, high thyroid antibodies, t4, t3 & a raised TSH which didn'tshow normal as the NHS bloods said and was above the normal range on 5.2...

    Grrr. ... !

    Thankfully I had read Thyroid UK 's advice on how to get tested and diagnosed, something inside of me  (God) kept saying "persevere" and also the fact that I am a determined logically-minded scientific medical data analyst with over 30yrs experience,  who had decided to go down my own ticklist of possible causes and push for the relevant blood tests to confirm/discard the likely diagnoses.

    Amongst my list were 



    -Haemochromatosis  (elevated iron in tissue storage )

    -Lyme Disease 


    -Rheumatoid arthritis 

    -Liver disease 

    -Pancreas disease 

    Etc. ..then and only if all tests would come out clear,  only then I would possibly accept a CFS, ME or Fybromyalgia diagnosis...yes, only after thorough blood and relevant testing.  Not otherwise! 

    *Do not let the medics push you off your logical mind track!*


  • LuciaAsturias, I had shooting pains in my feet, and ankles that wouldn't bend very well, particularly first thing in the morning. I tentatively self-diagnosed with plantar fasciitis. It disappeared very quickly when I started taking T3.

  • you are very lucky!  I am on t3, no t4 and this is the highest dose i can go without over medicating based on symptoms, i do not believe in thyroid labs, as a means of dosing.  My blood glucose and liver, kidneys become abnormal if i even do 50 t3..i am on 37 and lowering actually, by 6.25.  I have low cortisol and GH could be low too, all that could cause matter what the doctor says.  I also have leaky gut and issues with food sensitivities.

  • The feet problem was a late onset symptom for me - one of the last to arrive and one of the first to go. So yes, I was lucky with that one. :)

  • I sooo empathise...I was eventually lucky to find a good endocrinologist for my hypopituitism and also another for my weight and diabetes.they both work together as a team for me. Where do you live? If it's close to Taunton,  I can recommend them. However, don't give up..I saw 6 consultants in 2 years to get diagnosed. When I saw the rheumatologist she was excactly the same..just firing questions one after another and did not stop until she realised I was not answering..then I said which question would you like me to answer first..and what was the first question? As you gave me no time to answer, let alone to consider how to answer it. She looked at me like a bunny in the head lights...I don't think anyone had challenged her before. Be strong and take no crap from them ,challenge them. They do not have all the answers and we are their Guinea pigs. I have had to learn to complain about doctor to patient communication, they will never improve unless we do. Good luck xx

  • Hi there doesn't it drive you crazy! I went to my rheumatologist with high liver levels and a stomach the size of nine months pregnant and terrible stomach issues, doctors thinking I had liver cancer, then stomach cancer, then ovarian cancer and my rheumatoid told me that 80per cent of the world lived on rice and weren't fat so go home and live on rice, also the bone from my knee to ankle is twisted in causing my foot to roll up, his comment on this to my go was Trish BELIEVES her foot is twisted up! Take one look and it's obvious! Because of being soooo I'll I decided to go off my methotrexate and he blew me up and I was really crying and said well are you going to go on Sulfur oh then you will blame me for your stomach. I was devastated and have not to a rheumy for about 2 years.

    Interestingly I recently got diagnosed with a condition called Dysbiosis after 4 years of no one being able to give me an answer.

  • Oh..and i need counseling too!  I am sure if my symptoms were not so horrific, as well as all of the doctors i have seen in the last 6 years, i may be feeling quite normal.  I would be well, if i weren't  so sick..if that makes any sense!!

    Thank you everyone for your support.  I am in the US.  I went to this idiot doctor, to get a name for my pain, so i could possibly receive Disability from the government.  I was shocked, that she just poked me on my tight shoulder muscles and diagnosed me with theses 2 nondescript conditions, which by the way, have the same symptoms as Hypothyroid and Hashimoto's disease.  I felt she was insane.  I got no sleep again last night, due to being so disturbed by the whole thing.  I got what i wanted..diagnosis's and am still unhappy about it.  I guess that describes me pretty well.  It's just that there is no way she could have come to any conclusions about my health.  

  • Over a hundred years ago they knew that low thyroid hormones cause swelling: myxoedema. It's sad how ignorant doctors seem to be now, as though they've just dismissed all the research that went before.

  • i now, isn't it sickening?!!  I leave every doctor stunned and feeling like i don't matter.  They rush me through with their own agenda.   They are terrible.  Nothing more than an extension of big pharma.  I avoid them like the plague.  

  • The full effects of hashimotos and hypothyroid and how best to treat same are only known by members on this forum 

    Doctors and endos are clueless

  • we truly are is very frightening.  

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