Hey Everyone,
This is my second post. My girlfriend recently started treatment with levo for hypothyroidism and i've been trying to start researching about the best way to manage and optimise going forward.
It would be great to know how many of the group get private treatment vs NHS and would you recommend either pathway?
Some members said NHS as a start and then use Health Unlocked for more self-directed care. But would love to hear a broader opinion on what has worked best for others!
As per your post yesterday
First step is to wait 6-8 weeks after first starting levothyroxine
Get FULL thyroid and vitamin testing
Have you got any actual results to add
How much levothyroxine is your girlfriend currently
Likely to need further increases in levothyroxine over coming months
levothyroxine dose increased slowly upwards until TSH around 1 and all four vitamins tested and optimal
Coeliac blood test done as well
There’s almost 2 million people in U.K. on levothyroxine
Most probably never get to see any specialist
No point considering booking any private consultation until got full thyroid and vitamin testing results
NHS endocrinologist frequently won’t accept a referral if results are “within range “
Thyroid specialist endocrinologist are rare, most endocrinologists are diabetes specialists
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
If you decide to see a private endocrinologist then I’d definitely get a full thyroid test, antibodies & key vitamins (ferritin, folate, vit D and vit B12) prior to the appointment. It’s much cheaper to use Medichecks / Blue Horizon home tests than have these done at a private hospital. When you have the result of the thyroid bloods and vitamins, post on the forum for further advice; it may be that your GP is supportive of medication tweaks without needing to see a private endocrinologist.
One thing to be aware of is that doctors appear to be taught that thyroid hormones are terribly dangerous. From the things that patients get told when they ask for more Levo it seems that they (the doctors) would (privately) prefer people who are hypothyroid to be under-medicated rather than risk a problem that they think they will be considered liable for. They will claim that thyroid hormones are bad for the heart and risk strokes, and we risk death by taking too much. But the Yellow Card data doesn't bear that out.
It's worthwhile to know about the Yellow Card system, which records adverse events from all drugs prescribed by the NHS and even includes some alternative medicine pills and potions too.
I described the Yellow Card data for fatalities for thyroid hormones in this thread :
One has to bear in mind that the consultant you pay privately will also likely be someone who works in the NHS so the advice will actually be the same, but provided faster without the wait.
If you are looking for a different type of advice rather than faster advice then the question may be not 'private versus NHS' but 'who is reputed to be helpful in the areas I'm concerned with' and how can I find them.
No point going to a private Endo if they are as unhelpful as the ones described by many here. Got to find one who is more 'modern'.
So work out what you want first, then how to find it. Alternatively go to someone on the Thyroid UK list as a way of helping you to move a little faster down the road of finding out what you want.
I am seeing a private endo on Monday (London), at first I booked the appt out of pure panic when I had no idea what this frightening new thing was and needed to speak to someone, anyone. Help! Appt has been delayed for various reasons which has ultimately been good since I'm now a few weeks down the line after diagnosis I have clarified questions for her in my mind that relate to her specialism. For me its mainly around the relationship between HRT, Thryoiditis, risks of osteoporosis versus heart disease. Of course I'd like to ask her about gut absorption, folate, swollen ankles etc but I'm guessing she will know a lot less about those things and I'd have to ask someone else who is more gastro or a nutritionist or the expertise here.
Welcome to you both...
It's very early days yet!
Firstly...the majority of people do well on levothyroxine and lead normal lives.
However there is a cohort who do not respond well to levo and those are the people who need extra help, usually not always readily forthcoming from endos...either private or NHS.
The reason many of us arrived here!
However, until your girlfriend has fully trialled levo...
Starting dose is 50mcg which she has most likely been prescribed
This takes 6 to 8 weeks to settle in the body and there may be little or no signs of improvement at this point.
Don't see that as failure!
Be patient.
After 6 weeks a further full thyroid test should be carried out...many of us do this privately they provides more essential info than NHS tests.
thyroiduk.org/help-and-supp...
Ideally
TSH, FT4, FT3, vit D, vit B12 folate, ferritin and thyroid antibodies TPO and TG
The latter, to test for thyroid autoimmune disease aka Hashimoto's a common cause of hypothyroidism.
The results of those thyroid tests will indicate the need for a dose increase...most likely at that point.
Following any increase wait another 6/8 weeks and test again
Repeat until( hopefully) she feels well
Post any labs and members will advise.
Signs and symptoms must be considered alongside test results...treat the person, not just the numbers!
It can be disconcerting to learn one has hypothyroidism but certainly not something to be concerned about, at least until levo dosing has been fully trialled without positive results.
There is no quick fix I'm afraid....either on the NHS or private route.
I have a complicated thyroid condition ( long story) which I was not able to resolve until I arrived here....so I've done the hard yards!
There is much that can be learned but the first thing I would alert you to is the NHS obsession with TSH labs as a means of dosing!
This is where problems can arise
This may help explain...
The first author is a TUK advisor so the work is reliable!
"Time for a reassessment of the treatment of hypothyroidism"
bmcendocrdisord.biomedcentr...
Also...
thyroidpatients.ca/2021/07/...
Hopefully your girlfriend will have an uncomplicated experience and will fairly soon be on the way to recovery
If not, the collective knowledge of members here outweighs that of most medics.
This forum almost certainly helped save my life!
Not all endos ( private or NHS) are thyroid specialists...many/ most are diabetic specialists.
To answer your question ( at last!) I would start a thyroid journey with the NHS.
Just a few thoughts
Good luck
I would echo all of this. It’s really early days—much to soon to worry about whether you’ll need to go private.
@healthiswealth, I sense you’re in a rush to get your girlfriend well again—we understand that. But it takes some time to get back to “normal”—with hypothyroidism it’s a question of slowly working towards getting the right amount of replacement hormones on board and that can’t be rushed. It will take weeks and more likely several months. It’s not like taking antibiotics to cure an infection.
You’ll read all sorts of stories here that may make you worry about whether your girlfriend will get optimal treatment etc—but always keep in mind that the many many people who do well on levothyroxine never post here—they don’t need to find us.
As you are both new to this issue, I recommend checking out "The Invisible Hypothyroidism". Rachel shares her experiences of living with hypothyroidism and Hashimoto's and how it has affected her life as a young adult, coping well with a relationship and a career, through to the starting of a family. As you are obviously keen to support your girlfriend, you will find the contributions from Rachel's then partner, now husband, very informative. Not only is Rachel an award-winning thyroid journalist and advocate with a wealth of knowledge and experience, she is also the founder of the excellent FB group Thyroid Family: Hypothyroidism Advice and Support Group. I hope you will find these links useful. However, don't forget that those who experience no problems with their hypothyroidism, the majority, in fact, have no need to visit sites such as this one, so don't get worried by reports from others before you start!
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