I have just joined your health group and wonder if anyone has any thoughts concerning my ongoing thyroid related health problems.... This might be a long post, apologies.
I have just been to see a female gynaecologist for investigations connected with some prolapse issues of bladder/bowel/uterus - and for the first time ever on the NHS I felt I was listened to by someone who wanted to join up some dots and get an overall picture. She said that "something else is going on here" and asked me questions to do with my thyroid issues. She thinks that my prolapses may well be to do with an underactive thyroid causing constipation etc. I told her about the more accurate tests which are available privately and she said that if I organised them, she would receive the results. This seems like a breakthrough for me - but also a chance to educate a medic who may spread the word about the ridiculous state of affairs with thyroid non/under treatment.
Brief history - I am a 64 year old woman who started with thyroid symptoms - both hyper and hypo over 10 years ago, even though blood tests with my GP were always within the 'normal' range - although I had thyroid anti-bodies. A Urine test with a private doctor eventually showed that I was hypothyroid. I started taking 1 grain of Armour Thyroid, still didn't feel great but couldn't increase the dose because of that awful inner shaking feeling. After taking that for a couple of years blood tests with GP showed I was toxic with T3. I reluctantly started taking Levothyroxine only. So I have been diagnosed with Hashimoto's but can only cope with taking 50 mcg of Levothyroxine, prescribed by my GP, any more makes me have hyper symptoms - but meanwhile I have all the hypo symptoms continuing of extreme fatigue, constipation, weight gain, insomnia, brain fog, aching joints, 'fibromyalgia', no libido, heavy painful legs with that mucin jelly substance under the skin and around my joints (which no medic wants to acknowedge, start of serious myxoedema?) but can flip into over-drive and also I am so irritable/angry/close to tears/short tempered/anxious with a high startle response. My GP wants to give me anti-depressants, which I will not take.
Which tests from Genova Diagnostics would you recommend I order - the full Thyroid profile plus the 24 hour urine test - and some adrenal function tests? I want to get a complete picture about what is going on for me at a cellular level as well as what is circulating in the blood. Have any of you experienced pelvic issues with an under-treated thyroid? Also I have been researching pelvic venous congestion, which sounds very much like my symptoms too.
I would appreciate any thoughts before I see the gynaecologist next. I want to begin to feel well again - I feel that after being a very young-looking woman who was strong and healthy before 50, it has taken this long for any symptoms to be taken seriously.
Thank you, Lesley
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moorlandmists
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Hi moorlandmists, it would have been helpful if you'd included some blood test results in there. For example, what blood test said that you were 'toxic with T3'.
The inner shaking was probably caused by low cortisol, and if you have low cortisol, you will have difficulty increasing. So, that's one thing that needs testing.
Prolapses are known symptoms of low thyroid, as is constipation. So, she got it right there. lol 50 Levo is obviously not enough for you - well, it wouldn't be unless you're an octigenarian gnat with heart disease. Which is why you still have all these symptoms.
So, I would say you need your adrenals testing - 24 hour saliva Cortisol test - Don't know what you want a urine test for. TSH, FT4, FT3, rT3, TPOab, TgAB, vit D, vit B12, folate, iron and ferritin. Can't think of any other tests that are relevant to thyroid. And perhaps DHEA for the adrenals.
The Genova adrenal stress profile (a saliva test) covers DHEA as well as cortisol. Blue Horizon also does saliva testing for cortisol, but the last time I checked they charged a huge amount for it.
For the blood tests I would investigate Blue Horizon as well as Genova Diagnostics UK. BH has expanded their thyroid testing recently and some of their blood test prices are much better than GD.
I have seen people posting urine thyroid tests on thyroid forums before. The problem is that nobody seems to know how to interpret them, so I would give those a miss.
hello humanbean - a late response - many thanks for replying to my first post on the forum and apologies for not acknowledging it at the time, I was a bit scared and had not got my head round using the forum. Many thanks, I appreciated your suggestions which were very useful.
hello greygoose, just want to apologise for not responding to you after posting my first message on the forum - I guess I didn't know really what I was doing then and it took me a while to get the hang of using the forum. I appreciate that you took the time to reply to me and thank you for your suggestions.
Thanks for asking - Yes the positive upshot of the gynae meeting is that she has written to my GP saying that my problems are thyroid related - constipation, sluggish metabolism and she won't operate until I get my thyroid sorted - so GP has prescribed me T3....so I am just starting on T3 only, trial and error with dosage but I have great hopes.
I have written a few other posts here about blood tests etc - the thyroid ones do not reveal a problem, but clinically loads of issues. Another case of "Treat the patient, not the blood-test" .
The gynae could have ordered TSH, FT4 and FT3 serum tests if she suspects thyroid issues but the lab probably wouldn't have tested FT3 unless TSH is <0.03.
You might want to look at Blue Horizon as well as Genova for thyroid, cortisol and vitamins. Order FT4 and FT3 as there's no value in the Total T4 and T3 tests. The 24 hour saliva collection test is recommended for cortisol/adrenals.
I'm really not sure of the value of thyroid urine testing unless you know the doctor will be able to interpret it. NHS uses serum thyroid testing so I doubt NHS doctors are trained to interpret urine tests and I've not seen members on the forum able to interpret urine tests
I recommend you get ferritin, vitamin D, B12 and folate tested. Hypothyroid patients often have low/deficient levels which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.
Low ferritin/iron is often why patients are unable to tolerate thyroid replacement dose increases without feeling hyper.
Post your results with the lab ref ranges (figures in brackets after the results) in a new question and members will comment and advise.
Many thanks for welcoming me to the forum Clutter and for your suggestions. What a wonderful name - apart from health goals my main aim in life at the moment is to be free of clutter!
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For example, what blood test said that you were 'toxic with T3'.
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Advice Please
Aside from potential hypErthyroidism, are there any other possible repercussions from (mis)using T3?
