I'm just looking for some advice please, with regards to what questions I can ask, when I see an endocrinologist on 5 th February?
I am quite nervous as I have waited 6 years to see an endocrinologist with regard to my my underactive thyroid.
I find it extremely difficult to communicate with professionals, due to so many difficulties previously and them not listening to me, or giving me the time to explain myself fully. I now, usually burst into tears or talk at a 100 mile an hour, and I really don't want to make any mistakes, as I'm so desperate to get the correct help I need.
I think I've got hashimoto's because because my thyroid is all over the place. I've only had one good Year, since being diagnosed 6 years ago. I was taking 200 mg of levothyroxine and recently my blood test was slightly high, so the doctor lowered my levothyroxine to 150mg and immediately, I started to feel unwell again, all, the usual horrible symptoms, my motivation had only started to increase and now I'm back to square one, hair falling out totally fatigued unmotivated totally depressed etc etc.
Sorry for waffling on, but would really appreciate what to say to the endocrinologist, as the doctors (3rd Dr's surgery) never listen to me or answer my questions, when I asked them if I had hashimoto's, they wouldn't give me an answer. Rheumatologist that have given me their referral to see an endocrinologist I really don't want to mess this appointment up.
Is there anything else I need to ask the endocrinologist, or is there any list I could see, any further help would be greatly appreciated. Thanks
Amanda x
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ajb1969
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Do you have any print outs of blood results? Also write down all your symptoms and how you felt on the different doses and gain as much information from here before you go. Hopefully he will do bloods so follow the protocol on here for taking your thyroxine so you get the correct readings.
What Lalatoot has said, about writing things down, is definitely what I'd do, irrespective of how you present yourself. I'd even indent the main points, where the detail might be needed, but have the main point in 'que' form, jutting out to the left, just in CASE they need a byte sized chunk to deal with or address. It's easier for you to look through your 'note' then too.
I know that when I have written things down, SOMETIMES the doctor says stuff I wasn't expecting, which might lead to digressing from the main point; and you're so busy listening that you 'forget' the importance of your notes!
So I'd just make a bulleted list, and embolden the intro/cue into your question or topic; then you have a fighting chance.
We usually strongly advise getting FULL Thyroid and vitamin testing BEFORE seeing any thyroid specialist endocrinologist
First ....if you don't have full testing BEFORE consultation.....it can be pointless.
2nd ...often they don't do full testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
My doctors have all ignored me, when Ive asked, many times, for vitamin and a full thyroid blood test, (after receiving info when joining this website) however, it never happens. Drs keep ignoring my requests.
I was hoping that an endocrinologist would do all these tests for me.
So thank you, I will have to def, look into seeing someone privately, to get these extra blood tests done.
I've had my ferritin, vitamin D, and TSH tested.
My vitamin D is always low, yearly I have extra doses of vitamin D from Dr's. I need to start taking a higher dose of vitamin D myself at home.
Plus, I've always tested positive for thyroid antibodies, (sorry, I can't remember the correct terminology ATM ... Peroxidase ??? Something like this).
I'm so very tired, severely fatigued, since they've dropped me from (roughly August time when they dropped my dose from 200mg to 150 mg and taken 175mg for last
month.
Drs said to wait till March until next test and it's usually 6-months before they'll test me.
I can't keep awake, my sleep pattern is upside down, it usually occurs when my levothyroxine dose is reduced but I've just started taking pregabalin, so it could be a bit of both.
When on high enough dose of Levothyroxine for symptoms to improve frequently results in very low TSH. This doesn't mean over medication. Only if FT3 was above range would you be over medicated
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
When dose of Levothyroxine is reduced (inappropriately) low vitamin levels frequently result
It's EXTREMELY rare to find any medics prepared to treat patients correctly
Hence over 104,000 members on here and such vast numbers who end up self medicating
Hi Amanda, if you email Dionne at Thyroid UK she will email you a list. tukadmin@thyroiduk.org Or you could start a new thread asking for people to private message you a recommendation for your area. Also generally the advice here is to get the blood tests before you see the endocrinologist. The tests mentioned above are fairly easy to do at home and probably more cost effective than having them done via the endocrinologist. They are pin prick tests and they send you everything you need in a kit, then the sample is sent to an NHS accredited lab for the results. You can also have a nurse visit if you don’t like the idea of doing the pin prick yourself.
I would start of saying that you have made a note of what you want to ask because your memory isn’t good-thats a sign your medication probably needs adjusting so that should prompt him to test etc. If you take any results in when you see him don’t change anything from what you have always done as any changes won’t help in any case so then it’s down to him to change things as he sees fit. Tell him your doctors dropped your dose down by 50 mcg’s and felt a lot worse since-any decent Endo should know that increase/decreases should be done in 25’s! Let him know any other things that are troubling you ie have you really feel, sleep pattern, do you feel tired during the day, lack of energy-basically any symptoms. When you walk in you could thank him for seeing you, that might appeal to him to try and help you. Tell him you get tearful so feel something isn’t right. Probably make a better list than I am so you can group similar things together!
Yes, I'll definitely make a list. And that's so true. I am extremely weak, lethargic, and totally unmotivated.
I haven't stopped crying my eyes out, uncontrollably, for the past 6 years, nearly every day. I've become so overly emotional, it's unbelievable.
And, I was the exact opposite, before all this happened with my thyroid. I would never cry, especially in front of anyone, now that's all I seem to do.
I really appreciate your reply thank you ever so much.
What are your recent blood results - TSH, T4 and T3 and do you have high antibodies. I notice your high dose of levothyroxine was reduced by 50mcg which is a big drop and should never be reduced that much it should have been a smaller reduction like 25mcg. Does your doctor know what he/she is doing? or are they going by just your TSH which is not a thyroid hormone but a pituitary gland hormone which does not give a good indication of what thyroxine is actually in your body ... it is the T4 and T3 that counts. Also have you checked the Endocrinologist you are seeing specializes in Thyroid disease? because a lot of them are diabetes specialists and won't be of any use to you. Why have you waited 6 years to see one btw?
After joining this site and reading up on everything. I've been asking my doctor's to do the extra thyroid and vitamin testing but they've always ignored me. I've never had f3 or F4 tested, my doctor's have all said that they just don't do this. I've just had my antibodies and ferritin checked.
And my antibodies are always high.
And, after feeling so poorly, yet again after dropping me from 200mg to 150 mg, they are my exact thoughts.
I don't think my doctors have a clue what theyre doing, so that's why I've recently changed dr's surgery but I'm having exactly the same issue with the new doctors, I asked if I could go up to at least 185 mg but she refused and said 175 mg.
I told a rheumatologist, a few months ago, about all my thyroid issues and a doctor's refusal, to refer me to see an endocrinologist.
So the rheumatologist referred me.
The first two to three years my thyroid levels were up and down all the time and the Drs always keep refusing. I didn't want to lose my temper due to my frustrations, however, I just did with the last surgery.
Totally understand how you feel about seeing consultant. I am normally a fairly confident person but fall apart when having to speak to doctors! There is some quite useful information on this page from thyroid UK about noting symptoms and how to approach an appointment
Doctors are just the same as us and to be honest they don't intimidate me at all. You don't have to be rude to them even though I think some of them can be rude and dismissive to patients. Just put your case calmly and if they disagree make sure you have some evidence to back up your case. They probably won't like you knowing more than them but they should know more than you which isn't always the way I'm afraid. I hope understand what I am getting at.
Really appreciate the link, I'll definitely have a look, thank you so much.
I'm similar. I don't class myself as a totally shy person. I can be quite outgoing, but I seem to fall apart in front of Dr's too. I think it's because I'm not confident about what I have to say and I've not stopped crying since my thyroid issues began.
Take a relative or friend with you, who also has a copy of the things you want to say/ want to ask. Ask them to keep checking if you've said everything on your list, and remind you if you haven't.
I also think that drs sometimes take more notice if you say you've brought someone with you with your list.
Agree with all of this - and particularly TaraJR .. if possible it is worth taking a MAN with you, as for some reason quite a lot of endo's seem to think we little women are hysterical and stupid.
That made me smile because my husband was one of those parents. He was going to be a teacher but became seriously ill so joined the NHS as a trainee manager. All through my children's childhoods they would be questioned on geography(that was his main interest) maths, spelling and of course he spoke french so they would have that spouted at them. It really annoyed me because I do know eduction is important but I would not have been bothered what my children did for a career. My daughter did 2 degrees because of him and became a lawyer. She is now a stay at home mum and doesn't intend to return to the law ever again.
My husband and I mixed socially with Consultants and that might be the reason they don't intimidate me. One time I had an intimate examination by one consultant and then we went to a wine evening at the hospital. Who should walk in but the consultant I had seen a few days ago. He came straight over and said "I though I recognised the face" ... I nearly died and I knew he was being sarcastic! I then avoided him all evening! lol
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