Hi everyone , yes , it's the pain in the butt again , hope you are all ok .☺☺
I have now had written results from both Endo's that I have seen , 1 private , 1 NHS.
The private endo said , I was fine , blood results were all in normal range , even though he only ran 4 of them TSH ,FT4 , FT3 , and anti TSH receptor antibody. And said no further action was required , I should be reviewed in a year's time , but , he did say that he didn't think the thyroid was totally destroyed by RAI and that I still have a small part still very much active .
Now , it's taken them 6 weeks, but have just received letter from NHS ENDO with his findings ...........
DIAGNOSIS :-
1) medically unexplained symptoms
2) osteoporosis
3) PREVIOUS Graves disease , now hypothyroid
4) health related anxieties
PLAN :-
2 month trial of levo 50mcg and T3 20mcg ( split into 10mcg bd )
Follow up :-
Repeat TFT's in the community in 2 months time aiming for TSH greater than 0.5 and T3 greater than 4.5
Now , his letter also states as follows :-
He had discussed with myself and my partner about what an auto immune disease is and about the regulation of my immune function . This is total BS , it never happened. He also says he wonders if most of my symptoms are as a result of a very very poor sleep cycle ( insomnia ) . He also said if the T3 and T4 were taken as described in the plan , and the TSH is not suppressed and I feel good , to continue with plan , else if no significant change , revert back to present regime .
Now , this is my take on things :-
Yes , my sleep pattern is non existent , but as I explained to him , I am very fatigued ( as everyone here will understand how that feels ) the main thing that is keeping me awake is the pain from the stenosis and sciatica , NOT ANXIETY , like he is suggesting . As for the T3 / T4 plan , I mentioned this before I a previous post and the general feedback I got from that was that he was setting me up to fail .
Another concern I have is the fact he blatantly told me he had prescribed placebos in the past to people with similar symptoms to mine . How do I know he won't do that with me ??
Both mine and my partners thoughts on this are that , they could do that , so that it does fail , then they won't have to give me the proper T3 , saving the NHS and load of money in the long run .
Also , when I explained my symptoms, hair breaking off , brittle nails , eyes constantly very sore and bloodshot , very fatigued , no energy or motivation , lumps in left side of neck , hoarseness of voice , sometimes can hardly speak ( which my partner thinks is bliss lol ) , constantly getting colds and infections to name just a few , and this all started around April/May last year, obviously not all at once , but all have been getting progressively worse as time goes on . I also said to him that I had most of these symptoms 11yrs ago when I had my last flare up , his reply to that was , none of these symptoms are anything to do with my thyroid .
I am feeling totally frustrated and upset , the only thing keeping me sane , are all the lovely people here , especially one reply I got stating " gp's and endo's are about as much use as a chocolate teapot " makes me giggle every time I think about it .
Anyone's thoughts on this lengthy post ( if anyone still awake ) would be sooooooo much appreciated please . Thankyou all for ta king the time to read 😕☺
Written by
Sweetpea1157
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You sound as if you are having a rough time and I am so sorry to hear this.
First, blood results are needed to comment on this as I am not sure what the private endo means by “fine”. Second, what are the lumps on the left? Have you had a nuclear scan or CAT scan to determine if these are nodules or some other type of growth? Have you had a fine needle biopsy recently? Third, as I am in Canada I am not sure how the protocol goes, but it sounds as if your record with the NHS doctor needs to be corrected. I don’t know what mechanism there is for this. Maybe others in the forum have some advice on this. Fourth, when did you have RAI? When did your current symptoms present?
The problem as I see it is that your private endo does not seem to equate your symptoms with your thyroid. Without additional info, it is difficult to evaluate where you stand, and how to move forward from here.
Hi Greekchick , sorry not got back to you quicker , was just off to bed when you replied as our time zone is 4 hrs ahead of you , then had to out today , sorry ,
Now , you're asking about my blood results, to save me having to rewrite them , is there any way you are able to look back at my previous post 7 days ago , my blood results are typed out there , dont worry if you can't, I will rewrite them if you need me to ☺. The lumps in left side of neck , have not had a nuclear or CAT scan nor a needle biopsy , but have had an ultrasound scan , and am waiting to see E.N.T specialist on 16/04 , hoping she can shed some light on this , will keep you posted when I've seen her .
Very hard to get gp to cooperate here , as if you make too many waves , they have a tendency to strike you off their care .
The RAI was performed over 30yrs ago, but believe the thyroid was not totally destroyed .
Hope this all helps you understand my probs a little better .
I am positive that my present problems are the result of a thyroid flare up , and am only keeping sane by coming on here to this forum . No one in the medical profession ever explained anything to me , I just nievely put my faith in them , it's only since my partner found this forum around 7/8 months ago , that I have learned so much about my condition from all the kind people like yourself here ☺
Hello Sweetpea, that sounds stressful. I'm sure you'll get lots of advice on here about managing your thyroid heath. When I was first ill i was told it was most likely anxiety or medically unexplained symptoms. I saw a psychiatrist. I wasn't totally wild about this but he was brilliant and wrote to my GP insisting on full physical investigation and ruling out an anxiety disorder as the primary problem. Your endo has suggested an anxiety problem, so it might be helpful to ask for this to be assessed and if necessary treated or ruled out by someone actually qualified in mental health. They may help you challenge the suggestion that your symptoms are mainly anxiety and may also offer support with coping with physical illness. Get all the allies you can to make them treat your case seriously.
Hi Mike , thanks for getting back to me , I agree with what you are saying , you do need professionals in your corner helping and backing you up , but not as easy as sounds , have tried this already , I had a psychologist who I'd been seeing for a while who tried to help me , she even sent letters to my GP, she was totally ignored , but i will keep fighting for the right treatment as i know this is a thyroid flare up , this forum is helping me no end , only found this forum under a year ago , and have learned so much from all the kind people like yourself here . Hope you are managing to get things sorted yourself.
Take good care and thankyou ☺
Hi when you posted 7 days ago your results were FT3 Low and FT4 high. Why not self medicate I do and so do many others you required more T3, perhaps taking NDT would help you feel better.
I never visit the GP or Endos they made me ill. I now feel well and it's all down to taking the correct blood tests and taking the good advice on this site.
Your osteoporosis was probably caused by your Graves over some years.
Hi Bunnyjean, thanks for getting back to me , have got blood tests in hand , am just using medichecks from now on and posting results here , and taking people's advice on here . I am working on getting the T3 and hopefully will be starting that soon , I am so glad to hear you are in much better health .
You might want to read up on what "medically unexplained symptoms" (MUS) really are in the minds of doctors. Unfortunately, it isn't a promising or happy read.
Hi serenfach, thank you for that , had a good chuckle at that , the big man upstairs probably did too . It's little things like that that help keep our chins up , thankyou so much ☺
OK- so I looked at the bloods and agree with others who have already answered you about that. It will be important to talk to the ENT about your neck lumps - and if your ultrasound is inconclusive, you will need further follow up. I’m curious to know if they can see if any thyroid tissue is left from your RAI treatment.
You understand your body better than anyone - and if your thyroid situation is a flare up, hopefully you have gotten some good advice from this forum. I am more concerned about your lumps - and hope you get some answers about that.
I do understand how difficult it is to get care and not wanting to rock the boat- it’s a balancing act. I wish you the best of luck with your visit and sending you good thoughts.
Thanks once again Greekchick , I will be keeping you up to date with E.N.T appointment and will look into finding out about any remaining thyroid tissue , but in the mean time , could I just ask a question please ?? Now , i know i could be totally wrong with this presumption , tg antibodies are only developed to attack specifically the thyroid , so if I had no thyroid left , why would my immune system still be creating them , all be it a small amount ??
I have also been advised by people on here that I should have my D102 gene tested .
Hope again that this little bit of information helps .
Sending you sincere good thoughts too , please take good care ☺
So none of those symptoms have anything to do with thyroid? Have him go to the Mayo Clinic Web site and check out the symptoms for himself: mayoclinic.org/diseases-con...
Thanks for that vocalEK , totally agree with that , but think if I said that to him , he'd just show me the door , but think I do need to make a stand at some point , as they are not offering me any real help which is totally against the N.I.C.E directive
Just thank god I have people like yourself in this forum , taking the time to help me through this .
He may have been taught that every symptom of hypothyroidism can be explained by another condition. That probably is true, but over the years my doctors have tested me for those other conditions, and always came up negative. His problem is that he doesn't believe there ARE any symptoms of hypothyroidism. Sure makes his job easier.
Hi vocalEK, sorry not got back sooner , have been ill in hospital , thankyou once again for the reply , I think at the end of the day , it all comes down to cost , right across the board from diagnosis ( if you're lucky enough to get one ) to treatment ( if you're lucky enough to recieve that aswell ) , but we can but try . Hope you are keeping well , take good care ☺
That’s a good question, and one I would ask your endo. Based on other posts written on this forum, apparently you still have antibodies even if the thyroid is gone. I don’t have the knowledge to answer this question. My surgeon (a thyroid specialist) told me that once my thyroid was removed, I would have some antibodies remaining but there would be no thyroid for them to attack. If you have some thyroid tissue still remaining, could there be a possibility that you could produce antibodies? I don’t know. Wish I had a better answer for you, but would rather not speculate and think others have more information about this.
Thanks Greekchick , i completely understand and respect that answer , but thankyou for the help and support you have given me thus far , it doesn't matter if people here don't have all the answers , but being here offering help and support where they can , is a damn sight more than we get from the medical profession .
Will update you when get more info .
Thanks again , take care ☺
Heh sweetpea - you are so funny! At least you can have a print out of your results and a prescription for t3 and t4. You have achieved the magic from an NHS Endo.
Think he was laughing at you as you got no result from the private endo - and doubt if he will give you a placebo. You can but try the prescription to see how it goes. You will soon know if you feel better. As you have pain from stenosis, keeping you awake at night, do you take any prescribed medication for the pain? Suppose you have had gluten intolerance tests, which can create/make worse your autoimmune disease?
Celiac tests for wheat, dairy and egg can be done with vitamins on NHS. As you have thyroid problems you could well have other problems that need diagnosis.
Have your iron levels been tested with B vitamins. Iron deficiency can give similar symptoms. Guess the stenosis needs assessment by the right department - ie is it spine stenosis? If you have neuralgia is it in your back, leg or does it come from the hip?
Could it be a trapped nerve? Chiropractors do work with x rays on the nerve.
Hi hawii, have got spinal stenosis and sciatica , which was confirmed by MRI scan , which I had to pay for myself as NHS refused to do it . 😕
I had the same problem. Had to pay for an MRI scan which was 4 months out of date for ENT surgeon. He did a sinus drain, and corrected a deviated septum. and removed a lump of cartilage which was blocking my air way. Local doctors did not send a referral letter - he was embarrassed - I was lucky that he let me back for tests, just by making a phone call to his secretary when I came back for an inner ear infection which the local GPs could not see as it was behind the eardrum! Ha! It all started when I bit an olive stone, and broke my tooth. The dentist referred me privately - not on NHS so it was after an expensive op where a bit of tooth was said to be forcing it's way against gravity into my upper gum ridge. When they did the x ray for the tooth they saw I had a large shadow over my sinus.
After years of giddy spells so I could not walk without, losing my balance, I had my sinus drained - I was Ok within hours of the op. We wonder why we can't get help from the hospital when you know there is something wrong but you are sent away as a hypochondriac! Did they give you any treatment for the stenosis and the pain and tell you if a nerve was impinged? Expect you want to know if the swelling in the neck needs investigating. I guess as you have a mysterious condition you should have a blood test, to see what is causing the problem. Any discomfort with swelling round the neck would affect your breathing. Have you tried a V pillow so you can sit up or your head is raised whilst you sleep? If you sleep on the opposite side to the sciatica, it will relieve the pressure but you still will want to turn round. You could try a duvet to sleep on which helps the pressure points of your knees, and hips when you sleep.
Hope you get some blood tests done at doctor's. They will refer you for treatment to specialist if needs be. If you get no response ask for a second opinion - you deserve the right help! Do you think some of these doctors need a kick up the behind?
Hi hawii 60, sorry it has taken so long for me to get back to you , but have been very ill in hospital , yes i do agree with your question , some doctors need a good swift kick up the behind , i feel they just don't take the time to listen to you , but this time I was blessed with good doctors and nurses at the hospital . Hope all is going well with you , take care ☺
You need to be referred to a neurosurgeon for your stenosis in the spine. As you have the results from NHS then go back to your GP and discuss a referral to the right specialist.
If you have trouble with your doctor not understanding your problem find another one in the practice. Get them to look at your records and if you can remember the date of your tests this will help your GP to refer you. Don't give up. If you need surgery check up who is head of of Specialist team in surgery. You can find out from hospital online who is in charge of the department.
Hi hawii60, sorry , should of said , was not in hospital for stenosis , was in for another reason , an mri discovered that I had a dissected carotid artery, i am at present waiting for an appointment with a neurologists, i do get pain from the stenosis and sciatica , i am not keen on going down the road of surgery , but will look into getting acupuncture, i have had this done before on NHS, but wasn't much help , so may have to look privately , thankyou for your advice , take care ☺
So pleased you have found the answer to your problem. Hope you get better soon.
If you do not want an op and have pain perhaps acupuncture done by a medically qualified doctor might help. The pain must be difficult with the neuralgia.
Expect you have had advice about the stenosis but you can look it up on nh guidelines.
I had stenosis at L4/5 and had a spinal fusion 23 years ago. I was told I was just a complainer when I asked my GP and he gave me an Rx for Dilaudid. Thank god for my physio who sent me to a surgeon - I was so disabled I couldn’t walk 5 feet. My stenosis was crushing the spinal sac at the bottom of my spine and was squeezing it every time I walked. I could not sit, stand or walk. I have been quite well these last 23 years and with a few epidurals here and there am active and completely functional.
Please get an MRI to see exactly what is going on so an orthopaedic surgeon or neurosurgeon can properly treat you. I have used acupuncture regularly - sometimes it helps and sometimes it does not. If your bone is crushing your spinal cord, it won’t help you. It does help to relieve inflammation and some pain . I am not saying you need surgery - I’m not a doctor - but I would definitely want to find out.
I am saddened but not shocked to hear that a doctor has admitted to you he prescribes placebos for thyroid patients. This is gross malpractice. What a disgrace.
Your symptoms are consistent with thyroid disease and you have been diagnosed with it - and if your thyroid was not completely destroyed you do have antibodies that will attack what is left and cause some of the symptoms you have.
By the way, my thyroid was causing part of the back pain I experienced recently - and it may be doing that to you as well. I just had a TT 9 weeks ago for multinodular goiter with Graves. Much of this recent back pain disappeared after surgery. Who knew my thyroid was doing that to me? No one.
You may wish to find another endo (I know, not easy) - but it will be worth it - and write up your own notes to challenge this physician’s inaccuracies for the next person you see.
I hope you feel better soon. Sorry for this long reply but you had a lot of things to talk about and I wish you the best of luck.
Hi Greekchick , thankyou for your reply and concern , I had an MRI last year which is had to pay for myself , but it was only of the lower lumber pelvic region that was scanned, that scan revealed that I had spinal stenosis and sciatica which was as a result of a trauma I had just over 2 years ago .
The reason I was in hospital on this occasion was for a different problem , the resulting CT scan and MRI showed that I have a dissected carotid artery in the left side of my neck , oddly the same side I am getting the lumps and swelling , but they neurologists is saying they are not connected ?? Also the raspy voice which has been going on for months now , saw a ENT specialist, she said nothing sinister was going on and has refered me to speech therapy , but one thing she did confirm , the scans showed that I do still have part of my thyroid gland left , so don't really know where to go from here , am at a bit of a loss , it sounds like you have been through an awful lot yourself over the years and am glad to hear you are getting some respite, my thoughts are with you , take good care and thankyou ☺
Good luck to you as well and I hope you get some resolution to your problems. Hang in there, and sending you positive thoughts. Thanks for your good wishes! I appreciate it.
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