Endo Appointment - Exercise in Frustration

[MrsBeasley]

Thank you for your replies a few days ago. The endo is an idiot. Before I went, I knew he would suggest a drug treatment for the pituitary adenoma. There are two drugs, cabergoline and bromocriptine. When I read about them in advance of my appointment, it said not to take cabergoline with heart valve issues and also said bromocriptine might interact with some heart medicines. This isn't some fly by night website, I got it right from the cancer agency website since it's all through them even though it's benign.

So I asked him about the cabergoline and he didn't know what it might be referring to but said let's go with the other drug since I have a (congenital) leaky heart valve. I asked about an interaction between the bromocriptine and my diltiazem and he said it won't be a problem. So he prescribed me that one and I went on my way and dropped off my prescription at the pharmacy. 4 hours later the endo called me because the pharmacist refused to fill it because I am on diltiazem for an electrical problem in my heart.

Then he told the pharmacist to just give me the cabergoline. I called my cardiologist to ask what I should do but he's off until June 8 and I set up a phone appointment for that day so I am just going to wait to start it until I talk to him.

On the thyroid front, he insists the increasing TSH and falling T4 are nothing. He also isn't concerned about my ferritin and says low iron has nothing to do with the thyroid and to take that up with my family doctor. He insists the headaches I have behind my eye and in my forehead can't be caused by a microadenoma which goes against everything I read. I think I need a second opinion but that referral could take another 4 months.

[Katepots]

Yes he sounds like an idiot! Was that an NHS endo?

Might it be worth seeing one privately as I have always found if I see any dr privately (even just for initial diagnosis) I get much better and more comprehensive treatment.

What area are you in?

[elaine2447 in reply to Katepots]

It is a terrible thing when one has to rely on the internet and a decent pharmacist for information. Believe me it's not just the NHS that have idiot endocrinologists. I went to a so called top one privately at the Hammersmith, £thousands overpriced and useless blood tests, scans, still no further forward after 12 months. That was all because my "knowledgeable" GP was trying to convince me to chew on 3000mg of calcium per day but hadn't noticed that my blood calcium was over the range, so I thought I would get somewhere going privately, wrong!!!

[Katepots in reply to elaine2447]

Oh

I've struggled here too. I'm planning a March to Downing Street probably in the autumn to highlight all the problems we have and to insist on better blood tests and T3 on the NHS.

It's a lot of organisation, I will be speaking with Lyn Mynott soon and then looking into the legalities. I will keep everyone posted.

[Rosierebel in reply to Katepots]

Great news it needs doing. I am thinking about starting an online petition regarding licencing NDT

[Katepots in reply to Rosierebel]

Yes that's what I was thinking so when we march we can hand it in.

I will start a Facebook page after next week (as away) then we can all share our ideas and get the ball rolling.

[Rosierebel in reply to Katepots]

I have started a group on FB and gone public for the first time, normally private. I have looked up starting a campaign but need the energy to do this which I haven't got at the moment. Yes keep in touch we need to do something and we need to highlight all these problems people are having and being ignored.

[Katepots in reply to Rosierebel]

Great between us all we'll have the energy!im meeting with a very handy lady this who has a huge amount of contacts and is keen to help with the march.

[Rosierebel in reply to Katepots]

Yes I am keen on doing this, might not be able to physically march much due to arthritis but will do everything else I can to sort this out. It concerns me that there must be possibly thousands of people who don't have access to the internet or don't even think about doing research as I have done, who are suffering and not understanding why!!! It needs to be bought out into public awareness.

[Katepots in reply to Rosierebel]

Absolutely I was ten years in the dark!

We'll get you a scooter if you help to organise you have to be there! My daughter lives in London so they'll be a crash pad.

[Rosierebel in reply to Katepots]

Sounds good to me, my daughter lives in Kent, I'm near Melton Mowbray. OK but difficulty walking long distances. I like scooters though have used them in the past. Great to hear someone has the same idea as me.

[Katepots in reply to Rosierebel]

Will be in touch soon.

[shaws]

I'm sorry you have reached a standstill at present. Just as well you researched these suggested prescriptions and that your pharmacist is alert to interactions.

Endos are instructed to only take notice of two things TSH (from the pituitary gland) and T4. He isn't taking notice of your low iron either. You would think they'd have at least an idea of what effect deficiencies can cause. Neither are they aware of any clinical symptoms.

It's fine getting a prescription but to get something that makes you more unwell you/we have to deal with the after effects.

If you are in the UK and didn't get a recommended Endo from Thyroiduk, you can email [e-mail] who has a list. Also you can put up a new post giving your area and asking for any recommendations to be sent to you by Private Message.

[FlippinThyroid]

I too recognise the pain behind the eye and down behind my ear which I can also feel at the back of my tongue. I told a consultant, not endo but ENT that it felt like neuralgia and he said it was classic symptoms of migraine. Symptoms don't seem classic to me. I believe it's to do with the thyroid again and chronic sinus infections.

Glad to hear someone else has similar...

[Naomi8 in reply to FlippinThyroid]

I had recurrent sinus infections while on Thyroxine.This would mean I had to sleep almost sitting up while the infection lasted,usually 2 or 3 weeks,due to unbearable pains in my head when prone or even semi prone.I always ended up having 2 courses of antibiotics.

I was referred to an ENT consultant,who told me I did not have sinus issues after doing the nasal camera inspection.

August 2015,switched to T3 only & during building up to the right dose,had a month-long sinus infection.The pains in my head on one side which felt like pressure on the brain,meant I ended up sleeping on a chair for a month,2 courses of Amoxi,pain killers & ice packs on the head.

I was referred to ENT(I have relocated since the first ENT appointment)He told me I do not have sinus issues & probably have a neurological issue related to migraine & should be seen by the neurology clinic.

Reading in my Merck Manual,it states that inflammation of the SPHENOID sinus can be felt in the front or back of the head or be an ill-defined pain.The ENT consultant,on the other hand,said that the site of my pain indicated it was nothing to do with the sinuses.Merck also warn of the potentially very serious nature of fungal infections of the sinuses for people with impaired immune systems.Really scary.

I have since gone GF & hope that this,LDN & the right meds(T3 or NDT) will make a difference re my sinus infections in future.

(During the sinus infectionsI had no pain while up & about during the day,and steam baths were really helpful.pressure only built up at night,during an URT infection,when slipping down in bed.

I have not followed up on the neurology suggestion,because it is obligatory to have a CAT scan of the brain to gain entry to the clinic.I had already recently had a CAT scan of the abdomen due to a poorly-trained gynae which I deeply regret,so wasn't prepared to be bombarded by more gamma radiation,and certainly not to my brain.

I am very interested to read on this thread about pitutary adenomas.I am unable to wear my headphones for more than a couple of hours,due to pain on the left side of my head....

[Rosierebel in reply to FlippinThyroid]

I have been hypothyroid since having to stop taking Levo and going onto NDT and have noticed pain in my right ear and right side of my neck and sinus problems, I also read that this can related to thyroid problems, so have gone with it for now. I am on NDT now and slowly improving.

[Rosierebel]

Doesn't give you a lot of confidence does it, I would definitely go for a second opinion.

[FlippinThyroid]

I am so glad I have the company of you guys. Thank goodness I read the response from Naomi. I too have been asked by consultant to change to T3 only and he didn't mention withdrawal so I shall do it slowly by having T4 and double T3 over 4 days then go cold turkey off T4. I too have had horrendous sinus issues, earaches, pain behind eye, lump in neck, right side, painful tongue and an OCD tongue that can't stop moving.

[MrsBeasley]

Hi Sandy,

I don't have a goiter. I have a pituitary tumor and nodules on my thyroid. The nodule biopsy last month was negative and they want to treat the pituitary tumor with drugs.

Here's my latest bloods, done two weeks ago now.:

TSH 1.16 (0.32-5.04) previous tests of this were 0.64 and 0.81.

T4 Free 11.4 (10.6-19.7) previous test was 13.

Ferritin 17 (15-247)

My previous ferritin was 15 in November and I've taken iron supplements for 6 months and it's only gone up to 17.

I have a history of Hashimotos that was diagnosed when I was 17 or 18 and was treated with levothyroxine for years. I had my right thyroid lobe removed a decade ago and have been off medication since then.

[MrsBeasley]

Thanks everyone, it's nice to have a place to talk about frustrations. I am not in the UK, I am in Canada but we all have our share of endo problems!

[Daisylain]

Oh my gosh. .please see another doctor. I have pituitary malfunction. I also have low ferritin even though I take it daily and eat meat. I'm on my way to get 5 iron iv's because my doc says the other meds will not work until this is normal. And yes, I have headaches too. I'm sorry but do not listen to that doctor..mixing wrong medications do kill people. The pharmacist would know. Take care.

[faith63]

unfortunately, it sounds typical. Frightening. My Rheumatologist told me that low hormones, even GH and Thyroid and Cortisol, do not cause muscle pain. I have a damaged pituitary which has not been properly addressed.

[LAHs]

Yes, on the subject of changing doctors, this morning I mailed off a letter to a 3rd Endo (4th doctor, the 1st was a good GP but he retired). I struggled to find a way with my 2nd Endo but concluded, after a year that she was an idiot. This was confirmed when I looked up the address of the new guy (same clinic) and accidentally saw reviews of my current, 2nd Endo - we have a 5 star system here and she was getting a 1! I read the most horrifying reviews - and immediately posted my letter. I hate criticizing doctors because they mean well - but #2 was truly a dangerous idiot. Now, of course I am in deep trouble if #3 turns me down, I guess I will just make a big public fuss: Write a letter to the board of directors of the hospital system asking just where in America are there any good Endos, I only need 1 and I don't care where I have to travel!

[Vera-maureen]

It sounds like a second opinion would be great. Good luck!😉