Hypothyroid

Hi. I am not happy with my GPs approach to my low thyroid problems. Can

anyone recommend someone I can see privately in central or north London.

many thanks.Patzi

[BadHare]

Can you cut out the middle man, & self-medicate?

[dang in reply to BadHare]

Woaaaa.... there ARE good doctors out there. Let Patzi have a chance at finding a doc who can help before starting to convince them to self medicate. I'm tired of all the people on this forum pushing everyone away from doctors just because of their own bad experiences.

Please consider that self medicating should be a last resort, and requires a lot of education to properly pull off. Many of us members on this forum have really good experiences with docs and Endos (yes there are a lot of crappy docs out there, but let's not immediately tell someone to self medicate when they are clearly looking for professional help).

[BadHare in reply to dang]

I'm hardly trying to convince Patzi. It was merely a suggestion, & a solution that's worked very well for me at considerably less cost than private treatment & prescriptions

[Binkie]

my experience of private drs was just as bad as nhs, it has taken 2 years to find a good endo and i still find self treating less stressful. My experience from friends and forums is drs keep you slightly under medicated (ill) majority are anti NDT and no one wants to prescribe t3 any more. i pay privately for t3 prescription and get it in france where it is cheap.

If i had this group and support 7 years ago when my thyroid was removed i wouldnt have bothered with gp's, useless endos, wasted money on private appts...the stress caused by trying to work within the system made my recovery very slow. xx

[Kalicocat]

I agree with dang, self medicating can be a very dangerous thing. I would not trust any medication that I bought on the internet especially if it came from China. And self-medicating with T3 is even worse, as it can cause a host of heart issues.

My doctor started me on a very lose dose, 25mcg, and it took from August, 2016 until March 21st, 2017 to get my levels exactly where I want/need them to be. The road here was long and I didn't feel good for a large portion of that time. We would increase my dose by 12.5mcg every two months. Too large of an increase would have me feeling crappier. I also find that the same dose every day is better than alternating doses. I'm now at 62.5mcg per day and my TSH is 1.09 and my Free T4 is 17 with a range of 9-19, so perfect in my books.

When my TSH was still sitting around 2.8 I told my doctor that my Thyroid naturally makes 80% T4 and 20% T3. Since I'm medicating with T4 only, which is reducing my TSH, it only stands to reason that my thyroid's T3 output will reduce along with my TSH. So I wanted to medicate with synthroid until my T4 is in the upper range so that I don't run out of hormone during the day or after exercise. She said that makes sense, and increased my dose end of January.

62.5mcg ended up being the perfect dose for me, at least for the moment. All of my pain, fatigue, brain fog etc are gone. Hip pain is my biggest problem, and that has finally left as well.

[BadHare in reply to Kalicocat]

I buy FDA approved NDT, & OTC T3.

The heart issues sound like the scaremongering tactics endocrinologists use as an excuse to stop prescribing T3, refusing to prescribe NDT, & maintaining so many people under medicated & hypothyroid.

The only issues I have experienced, have been self-inflicted in taking my initial TH dose increase too slowly by being excessively cautious, & once forgetting.

[Kalicocat in reply to BadHare]

Triiodothyronine is an active hormone and if you are trying to keep your T3 in the top third of the range your T3 levels will go over the top end of normal each time you take your dose. That means you could spend several hours with too much T3 in your system. If you take it twice a day you would double those hours that you spend over the range. Here is just one study:

ncbi.nlm.nih.gov/pmc/articl...

And a quote from that study:

"A major limitation of these studies is that triiodothyronine in the current formulation does not result in a normal physiological profile and the triiodothyronine-levothyroxine combination has been shown to be associated with wide fluctuations in FT3 levels".

I would only consider taking triiodothyronine if it were in a timed-release formulation, otherwise I would consider spending the majority of my day with over-range T3 to be unsafe. All I have to do is look at what happens to people who are hyperthyroid to know what elevated levels of T3 does to a person.

[BadHare in reply to Kalicocat]

You should be an endocrinologist, seeing as they don't like T3 either.

I've no idea what my current range is, but my last blood tests showed I needed more. I certainly feel better for increasing my morning dose, & don't feel as if I take too much or remotely unsafe.

My best friend much preferred having Graves to being hypothyroid.

[Kalicocat in reply to BadHare]

It took me 7 months and a lot of patience to feel normal again on T4 only. I just think a lot of people don't give their bodies and medication enough time to adjust. I was thinking I was never going to feel better, and kept telling my doctor that I still had hip pain and fatigue. But I started feeling much better about 3 weeks ago and my levels reflect how I'm feeling.

My dr. refused to check t3 the last two times, but I'll ask her the next time I feel like I need an increase in meds.

I believe they will come out with a timed-release T3 (if they haven't already) and that is when I think it will become a much safer hormone. Over-range T3 can cause a lot of problems especially in someone who is prone to heart issues/arrhythmias. And you may not know if you are prone to these heart problems until the problem happens, and then it is too late.

[helvella Administrator Thyroid UK in reply to Kalicocat]

I assure you that there are many, many people who have taken it slowly, carefully, for a long time. And utterly failed to feel right.

We also see many who, like you, have achieved a decent state on levothyroxine. (Very glad you are doing well.) They might stay well for a long time - many years - then something goes wrong. From then on, they never seem able to improve and only the addition of liothyronine ever helps.

There have been many attempts at producing so-called timed-release T3 medicines. There are great difficulties - not least, how do you ensure a medicine, any medicine, that actually releases evenly over 24 hours? Do you take one tablet a day and hope that it stays in the gut long enough? Or several a day? What do you do about the likelihood that absorption will vary through the legnth of the gut?

I am extremely doubtful that a timed-release product is possible. What might be achievable is a device that releases thyroid hormone (whether T4, T3 or any combination) like various existing pump devices.

Also, it is patent that levothyroxine-only does not and never can result in a normal physiological profile.

[Kalicocat in reply to helvella]

Thanks for your reply. I certainly hope that never happens to me because my heart would not be able to handle T3. I already get PACS, PVCs, and skipped beats and I'm sure I've had afib as well (scary long runs of palps), but it's always managed to right itself to this point.

I've read about a lot of pharmacies compounding t3 and it is working for a lot of people. I'm not sure why they haven't come out with an FDA approved form. They have a slow release metformin that works well for diabetics so I think it's doable. However, they may not be spending any time on formulating something because the majority of people do fine on T4 only.

[BadHare in reply to Kalicocat]

I've read several times that only 10% of people feel well on monotherapy. Good that you're in that low cohort. Hoever, based on that, & what Patzi posted, perhaps you're trying to influence her to continue suffering under incompetent doctors, & potentially wasting her money.

[Kalicocat in reply to BadHare]

And that is not my intention at all, I think everyone needs to continue to search for a doctor until they can find one that will work with them, period. I'm very lucky to have one that listens to me and respects that I do a lot of reading/research and that I really do know what I'm talking about. It took me a lot of years to find her. And there is only one endocrinologist that I know that will treat on symptoms once he knows that you have hashimotos, most others I've seen will not treat until the TSH is over 5 and sometimes over 10. In fact this endo increased my meds 10 years ago due to low T3 and I decided not to listen to him. My low T3 went away after about 3 months (who knows why it happened - maybe stress?) and I did not need to increase my T4 or add T3 to the mix.

Also, I know a TON of people that do fine on T4 alone once they find their TSH/T4/T3 sweet spot. In fact, I don't know anyone who takes T3 along with T4. I tried to join a T3 study after my first bout with hashimoto's and by the time I saw the doctor he had stopped the study early due to T3 complications and said he would never treat with T3 after his study failed.

[Kalicocat in reply to helvella]

And then there's this:

cbc.ca/news/health/doctor-s...

[helvella Administrator Thyroid UK in reply to Kalicocat]

I can't see anything specific to liothyronine/T3 there.

Do bear in mind that the only thyroid product withdrawn from the UK market in the past 10 years was the old formulation of Teva. (There might have been batches withdrawn but not a product licence.)

Some people find that liothyronine helps with their heart issues. There is a growing list of papers from cardiologists about the use of liothyronine.

This paper suggests low FT3 is associated with worse mortality in subjects being investigated for heart issues:

ncbi.nlm.nih.gov/pubmed/278...

[Kalicocat in reply to helvella]

That link I posted above just shows that sometimes when levothyroxine stops working it's because the batch is bad or the company changed their formulation, not because the levothyroxine just doesn't work for the person anymore. There wasn't any reference to T3, sorry for the confusion.

I've read many forums where people have said that their levo stopped working but they are fine now on another brand, so I think this batch problem could happen more often than we think. Meaning that not everyone may need to add T3.

[helvella Administrator Thyroid UK in reply to Kalicocat]

We had a major issue with "old" Teva in 2013.

That article said the company found the Canadian product had full potency. However, that is ALSO what they said about Teva. It was when they found one of the other ingredients was affecting the relase of the levothyroxine that the actual problem was explained. (The company had substitued one dextrin product for another - against the product licence.)

Howver, we do see this where there is no suspicion of the levothyroxine product itself.

[BadHare in reply to Kalicocat]

I prefer Dr Lowe's information Shaws has posted several times, regarding the only T3 heart danger is to people already suffering heart failure to the point where a cup of cofee would kill them. An ECG showed my heart was fine, & I now have a pulse that was previously difficult to detect.

I am so delighted by the results I've had from self-medication, having been unnecessarily hypo for nearly 40 years. I'm sure that has done a lot more long term damage to both my body & mind. My only regret is that I was unaware that I had this option until two years ago.

I feel as grateful to the wonderful admins & people on here, that helped me to help myself, as I feel resentful to the numerous doctors who have let me down, & seem utterly clueless about my condition. So many posts on here suggest this is the norm for those with thyroid disfunction. My curent GP has only seen improvements in my health over the past 18 months, & has been supportive regarding issues with my endocrinologist.

[Kalicocat in reply to BadHare]

I completely agree that going un-medicated is dangerous and can kill you. My uncle went for years with a totally swollen body (I thought his kidneys were failing) and all he needed was a levo increase (along with a new doctor). He had myxedema and his joints were so sore he could barely move.

I'm so glad you are feeling better, and I hope that one day your GP will prescribe what you are taking if he is seeing such improvements in your health. My issue is self medicating with T3 specifically. It is not benign. My slow heart rate, low body temperature and fluid retention plus pain have finally left on T4 alone, but it took a looonnnnggg time.

[Binkie in reply to Kalicocat]

my husbands best friend is a cardiologist and he told me straight 'the damage done to my heart by being unmedicatedfor 6 years and under medicated to begin with has done far more damage than over medicating will ever do. The strain of my heart rate being so low for so long is why i have cholesterol, my heart beat was not strong enough to clear it, weak heart tresses all other organs etc.

T3 burns up fast so even being slightly over for few hours after dose is nothing more than the equiv of too much coffee.

under medication does not saturate our receptors and keeps you weak. I would trust this mans views over any research or endo xx