An idea to help find a really great thyroid dis... - Thyroid UK

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An idea to help find a really great thyroid disease doctor

ShootingStars profile image
8 Replies

Hello! I have an idea to help some people find a new doctor who understands how to treat their thyroid disease. My idea applies to Hashimoto's Graves, Hypothyroidism, and Hyperthyroidism. My idea will not apply to every person in every country, but will apply to some people in some countries. If it doesn't, perhaps my idea can somehow be tweaked to fit your situation. I realize that readers here are from many different countries, and that each country has a different health care system, none of which I can claim I fully understand aside from my own country. I believe that most countries have compounding pharmacies, right? Below is how I just found three new Hashimoto's doctors that I can see who are all highly recommended and highly competent doctors who all treat Hashimoto's. If the first doctor doesn't work out, I have two more options as backups:

Yesterday, I decided to call our top local compounding pharmacy in search of a referral to a really good Hashimoto's doctor. I told the the pharmacy tech about my struggles with Hashimoto's, my major autoimmune problems, as well as the difficulty I've encountered in finding a good doctor who understands and treats both. The pharmacy tech I spoke with said she'd talk with the pharmacy owner and have the her call me. The owner called me today! We had a lovely long conversation. She gave me three recommendations. I chose one, called her, and I am scheduled to meet her in two weeks. I am very thankful that she is in my insurance network.

One way to find out the names of top compounding pharmacies is to look on directory app or website called Yelp (US), or something similar in other countries where patrons offer online reviews and star ratings.

If your country does not have a compounding pharmacy, you could go to a regular pharmacy, ask to speak to the top pharmacist, and ask them who prescribes T3. Why ask about T3 doctors first? Any doctor who prescribes T3 is more progressive than those who only prescribe T4. After that, also ask for some doctors who prescribe T4 and if any of them have indicated that they treat autoimmune diseases (if this is what you're looking for).

Good luck! I hope this idea helps at least one person find the doctor that they have been searching for!

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helvella profile image
helvellaAdministrator

In the UK, I suspect that of the doctors who prescribe T3, the majority do so effectively under instruction from an endocrinology consultant. That is, they might know virtually nothing themselves.

Our system for non-standard medicines appears to rely on hospital pharmacies and "specials" manufacturers. In general, these specials companies only talk to pharmacies. So pretty much a dead-end.

Sorry to be so negative, it is always worth trying.

ShootingStars profile image
ShootingStars in reply tohelvella

Hi Helvella. Thanks for your response. That is too bad. Maybe finding those endos is the answer, then? Along similar lines of thinking out of the box, if in the UK, couldn’t a patient speak with a pharmacist or pharmacy manager and inquire about the doctors who prescribe a lot of T4, then? Doctors who are treating a lot of thyroid patients •might• have a bit better understanding than those who don’t.

Another idea: if my original idea is not applicable in your given country, do you have Facebook thyroid groups in your country where people could ask for referrals to good doctors? All doctors are not created equal. Surely there are patients somewhere in your particular country getting adequate treatment for their thyroid disease, and autoimmune conditions if they have them. Everyone can’t be undermedicated (although looks very common for people on this site), or insufficiently tested (also seems to be a very common trend.).

helvella profile image
helvellaAdministrator in reply toShootingStars

I don't see much reason to hop over to the data slurping site! :-)

Thyroid UK do maintain a doctor list available on request.

It sometimes feels as if the only patients getting decent care are those who can afford both the requisite medicines and testing on a regular basis - and do so themselves.

ShootingStars profile image
ShootingStars in reply tohelvella

H! I know! Can we get a group thumbs down on that one? :-) The good thing is, some, if not many of those groups are public and you don't have to have an account to read the comments. It's still there as a free resource for those who want to try to help themselves, if they aren't happy with their current situation.

The difference in asking a pharmacist or getting a referral to a good doctor from someone in a thyroid group over just picking a random one off of a list, is one that is highly recommended over one that is totally random.

It is such a shame that patients have to order tests themselves. Aren't there some doctors somewhere who order complete testing and medicate correctly? Creating an independent list of thorough and effective doctors is another idea.

I'm sure that this was tried a few years ago by looking at NHS data on T3 prescriptions and trying those surgeries. However, in the UK with new NHS rules, the whole landscape has changed. I think the TUK list is good as we're going to get. I know of only one compounding pharmacy in the UK and the doctors who use them are very expensive.

ShootingStars profile image
ShootingStars in reply toAngel_of_the_North

Couldn't patients that choose to be proactive in finding a better doctor seek to find one by some of the above methods? Or are patients not allowed to choose their own doctors?

Angel_of_the_North profile image
Angel_of_the_North in reply toShootingStars

No, you can't choose your own doctor unless you pay privately (and then the doctor has to agree to see you). Within a practice you are "allocated" a doctor, but you'll probably not see the same one every time (or even more than once!) unless it's a very small practice. If you live in an area with more than one practice near by, you can change to a different one if they will have you (and if you are considered "difficult", word gets around and they might not accept you). You have to be in their catchment area.

In the US I have found that pharmacists are a great source for information. Often I get my med questions answered more quickly, correctly, and efficiently than the dr's office. Doctors don't seem to want to bother, refer you to the nurse who sometimes doesn't have as much knowledge as patients who do their own research. Also, I believe there is an upside to the general money greediness over here re pharmacists as resources. They want your business and time and money are spent trying to get people to switch pharmacies. Also, who knows what agreement a particular pharmacist may have re dr referrals (privately). I guess sometimes the end justifies the means! Don't ask the pharmacy clerks/techs at the front. Go straight to the pharmacist with your story. If the tech insists on knowing what you want tell them you have personal medical questions and want to speak privately. It's the american way!!!!. Be pushy to get thru the 'front line' if you have to. Good luck. irina

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