These are the results from October which the ENT consultant requested. She referred me to Endo and he has refused to see me because bloods are fine
TSH 6.2 (REF 0.2-5)
FREE T4 11.8 (REF 9-24)
Thyroid Peroxidase TPO 240 (REF 0-59) says "may be consistent with autoimmune thyroid disease"
Antinuclear antibodies NEG
CENTROMERE SERUM <0.2 (REF 0-0.9)
Any `input would be greatly appreciated
Debbymcc60, Your results are not fine at all. You have positive antibodies (Hashimoto's) and TSH is over range.
"Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, has recently written in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2 But if it persists then antibodies to thyroid peroxidase should be measured.
If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."
thyroiduk.org.uk/tuk/about_...
Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP, and ask your GP to commence Levothyroxine replacement. Louise can also provide a list of member recommended endos on request.
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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thankyou,Clutter I definitely don't feel fine. I will gird up my loins to face GP.
As I waited so long for these to be sent to me I have now ordered a Blue Horizon test which also arrived today. I s the Antibody test the same as Graves? I have the list of Endos from Louise. I have a growing paranoia about speaking to any doctor 
Debbymcc60, thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies(TgAb) are for Hashimoto's (autoimmune hypothyroidism). TRab and TSI antibodies are for Graves disease (autoimmune hyperthyroidism).
oh that's confusing as it doesn't look like they were tested. It was Graves that I was diagnosed with 16 years ago and had relapse of 6 years ago. Very textbook hyper symptoms and TSH undetectable. Now I feel as if I swing between both, completely fidgety shaky and insomniac with painful throat or morose freezing and like all the rapid digestion suddenly stops and I bloat massively and have painful throat
. I have autoimuune colitis. I also have family history of Graves. My mum was misdiagnosed with CJD we were told to put her in a hospice. She had a rapid onset dementia. It was actually autoimmune cerebral vasculitis.
Debbymcc60, Graves antibodies don''t go away but you are definitely not hyperthyroid now as TSH 6.2 is hypothyroid. It's not uncommon to have Graves and Hashimoto's, and Hashimoto's can make you feel as though you are swinging from hypo to hyper.
thyroiduk.org.uk/tuk/about_...
aw its miserable. thanks so much for your time. Ill make GP appointment
thankyou for being nice I need to have a small cry. I have been told that I have Somatic Symptom Disorder, so have been written off. Although Iv changed GP I'm afraid to even speak to them.
I think I can imagine the name of your consultant! If not then it is someone who also goes by the same stupid - (I don't know what's wrong with you but I'll give you a 'diagnosis anyway'. Oh. Yes. Your TSH is in range but you are dissatisfied with levothyroxine so, yes, you have a Somatization Disorder. I wonder that we keep patience with 'supposed to be' the caring profession. Lots are, mind you, but with regard to the thyroid gland they definitely need education, education, education.
healthunlocked.com/thyroidu...
I know shaws, I haven't even got thyroxine, apparently all these results are fine. Me thinking having antibodies almost 200 above upper range is a concern is just me obsessing. Im too tired
it is actually a good thing the Endo didn't see you..because he is an idiot anyway. Don't waste time and look at Louise's doctors list. Ditch your GP as well..they don't seem to know what they are doing.
Overall I think I want to try to manage it myself Iv had terrible experiences. Every encounter upsets me and reinforces their idea of me. No aspect of my life is like this, I'm a professional person, I'm very independent and work hard. I took no time off sick through 2 long episodes of Graves. Worse thing is my family don't know what to think. How do you get access to self treat?
Also I was thinking of trying to get an ultrasound because my neck hurts and its never been examined, using my arms is really difficult because it seems to pull my throat around my collar bone. I will struggle to afford it so need to know that its the right thing to do??
me too! I hate doctors and feel very intimidated by them..just horrifying, degrading experiences! I really wanted to tell you, forget the doctors in general. You don't need to keep getting labs, to self treat. If you use t3 on its own or ndt, just go by symptom relief not labs. Some get worse on ndt, i did. Hashimoto's can be a temporary thing, according to functional medicine. I am trying to heal my immune system and get off of thyroid meds.
With graves, now hashi's, your immune system is really messed up. Start here..
lol that's hilarious. Obviously I don't have much clue about what its meant to feel like. Certainly no massive swelling. but hard and lumpy and in my opinion lower than it used to be.
Perhaps Ill do a bit of a search on here
I have ENT follow up on 11th April, but I was supposed to have seen Endo by then so don't know what she will suggest.
Ill keep you posted
Autoimmune colitis?
Have you tried going gluten free?
No but I think that I will, do you think its worth having the test for Caeliacs is that 1 I can do from home?
Ask to be referred to a different endo or a different hospital.
Hi this is the situation I'm in graves and then hashis never feel well. TSH currently suppressed so endo wants me to lower dose. Do you have links to any papers that state about needing higher doses after graves?
I think reading the post it is the ENT doctor who won't see her again, and who has done the right thing and referred her to an endo.
No, it's the Endocrinologist. I have a letter this is a cut and paste edit
"I would like to suggest an alternative to seeing Mrs (me) in the Endocrine clinic. I note previous problems with Graves and note elevated Thyroid Peroxidase antibodies in the past. On biochemical testing there is no indication of Graves’ disease. I therefore do not think there is any merit in us seeing her, as it is unlikely we will be offering or suggesting any treatment.
I hope you (referring ENT lady) do not mind me responding in this manner I am simply keen that she obtains the smoothest pathway to the most appropriate care avoiding raising concerns unnecessarily
Best wishes
Prof *******
Lead Consultant and Hon prof of Medicine and Endocrinology
this is the full letter with personal info edited. I be grateful if anyone can see what alternative he suggests? or like me they can feel the sarcasm and ridicule loud and clear
Thanks for the information. Darn could have done a paper to brandish under endo's nose. I tried NDT once but stopped because the inside of my knees went purple and I got breathlessness, however am now getting this t4/t3 combo as well so maybe it's worth another go with NDT.
I don't know - I wish I'd been tested before I went gluten free. Having gone gluten free, I'm now in a position where I can't get tested because I'd have to start eating gluteny foods everyday - and I'd be very poorly for weeks.
It's worth seeing what the blood test might throw up - though I do agree that gluten sensitivity doesn't always show up.
Hi all, I have been on 200mg levothyroxine for around 5 years for hypothyroiism and had a scan saying my thyroid was swollen and had multiple cysts and showed I have Hashimotos thyroiditis. My doctor sent for another blood test in December that showed positive for antibodies, so I she sent me for another blood test in February for thyroid because of my weight gain and continued symptoms but it came back normal. She sent a referral for me to see an Endo. But I got an appointment to see the ENT. They put camera up both nostrils and said I have sinus problem and a swelling at back of tongue which I wondered could be related to my thyroid. The ENT said they can't do anything about my thyroid and should see an End instead. So even though I see the ENT and have problems I should of seen an endo. My doctors today as finally sent a referral to an endo for me, yippee as I am feeling so unwell. I've had a migraine type headache for 9 days on trot but I normally only get 2/3 a week. I have no energy and tired all the time, headaches, severe sweating, constipation, dry skin, blurred vision, dizzy spells, and pain where my thyroid is. Also have joint pain but I have arthritis in my neck, knees and hands and have had spinal fusion to L5/L4/S1 with further problems further up and 2 degenerative discs in my neck. My wrists and hands have been painful to and I've had 3 ops to both little fingers but now some of my fingers are twisting inwards. I also have had Fybromyalgi for 15 years. I'm not sure if have other problems now. I just wish these headaches were sorted out. When I had my back done they said I had severe nerve damage which they tried to repair and I think its that causing my headaches on top of my thyroid and Fybromyalgia problems.
At long last my test results are here despite the Covid delays
Further to my last post about Levo and joint pain I now need help to understand my blood results.
