I’ve been seeing a private doctor who prescribed t3, she is German and a homeopath as well so she has a different approach, she is not an endocrinologist.
my latest test results are based on 50mcg levothyroxine and 15mcg liothyronine taken in one dose.
she thinks I need to test reverse t3 as although my t3 has finally gone up it isn’t as much as she would expect and also t4 has gone down unexpectedly. She recommended increasing t3 to 20 mcg in 2 doses. She also thinks I will end up on t3 alone.
in the meantime I was referred to ent for persistent sore throats, re growth of tonsils and swollen glands. He decided I probably had chronic fatigue syndrome (?!) based on a 10 minute consultation. Referring me to endo who says my thyroid is swollen hence pain and congestion I’m getting more bloods on nhs and ultrasound of thyroid and dexa scan as I have osteoporosis
My concern is they will see super suppressed tsh and say I’m over medicated
Also they won’t necessarily understand reverse t3 result but as the homeopathic doctor says she uses it a lot with people who struggle to get any stability or full symptom relief on combination and finds it useful.
im worried I’m going to struggle to argue my case if they just don’t believe in it but I would like to understand why my thyroid is swelling (previously small nodules found under 1 cm
If anyone has any experience of this rather meandering route because their thyroid issues aren’t straightforward I’d be grateful to hear your story
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Mag999
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looking at your results and the symptoms you mentioned I’d say you need to gradually increase your FT4 with Levo, the Levo dose you are on is unlikely to be enough. E.g me … in 100mcg Levo and 15mcg T3. I get T3 privately.
When my FT4 is as low as yours I have no energy, feel weighed down. Aches and pain all over.
You may need to reduce T3 over time as increasing FT4 may well convert some.
Are your vitamins and minerals optimal?
Low ferritin and low D and low B12 all give me fatigue too.
I saw ENT for similar throat and discovered under medicated hypothyroidism causes silent t reflux and camera showed my throat /larynx were redraw. ENT wrote to GP and explained my dose needed to be increased. Follow up appointment 3 months later, all gone.
Reverse T3, I’ve observed there are two camps, one side seem to hold some sway that it’s bad for us. Other side say it’s pointless looking at it. I have no opinion other than it’s expensive to test and expensive to pay the ‘experts’ to interpret! All I know for sure is… If I keep my FT4 and FT3 in the top of range and vits at top of range I feel well, and I can do that pretty much by myself (with the amazing support here) at no extra cost. 🌱
she thinks I need to test reverse t3 as although my t3 has finally gone up it isn’t as much as she would expect and also t4 has gone down unexpectedly. /
T4 has gone down 'unexpectedly'? That doesn't say much for her knowledge of treating thyroid. The FT4 always drops when you start T3. But that has nothing to do with rT3. Nor does rT3 have anything to do with FT3 levels when you're taking T3. So, what exactly does she think this test is going to tell her?
All it will tell her is if your rT3 is high. But it won't tell her why. And there are many, many reasons for high rT3, and only one of them has anything to do with thyroid, and that is when your FT4 is high/over-range. Your FT4 is below range so is hardly going to be converting to excess rT3.
Also they won’t necessarily understand reverse t3
Of course they won't, because there is nothing to understand. All in all, it's a very expensive, pretty useless test.
rT3 is inert, and only stays in the body for a couple of hours before being converted to T2. It has nothing to do with symptoms, swollen thyroids or nodules - or anything else come to that. I can't help feeling you're being conned by this doctor. Be very, very careful of her.
It’s difficult for me to respond as I have had to trust this doctor as it was the only way I could get a prescription for t3 without bankrupting myself. It was my interpretation of my results when I wrote t4 had gone down unexpectedly, I had read that t3 affects t4 but as is more often the case these days I forgot. I am quite overwhelmed by all the information and I don’t seem to have a clear path, it’s taken me over 2 years to get to this point and I still don’t feel in charge of my health.
I take your points on board and will go back to her to ask further questions. She does see a lot of people locally with thyroid issues and is well thought of.
Yes, I understand. Although I have to say, I've been buying my own T3 for years, and I'm not bankrupt yet - and I'm far from being rich!
There's never a clear path forward with thyroid. It's all trial and error to find what suits you and what doesn't. And if T3 is making you feel well, then it's great that you've got it. I'm just saying that you should be very wary of a doctor that thinks the rT3 test is a great help. And I wonder what she's going to do if it comes back high!
How do you buy yours? I assumed I needed a prescription? I’ve done most of the dose adjustments based on medichecks blood tests so I don’t really need her other than to prescribe.
I buy it on-line. I would suggest you write a new post asking people to PM you links to their trusted on-line sources.
And, if you get any replies, contact one of the admin to make sure the link is bona fide and not a scam - because there are a lot of scammers out there!
having just read your previous posts Mag, i'm surprised at the suggestion to increase T3 to 20, while fT4 is so low that is now below range .
i would have thought it would be more logical to increase Levo to 75mcg at this point .
regarding the reverseT3 test ..... your T4 is currently below range with T3 at 43% , so even if reverse T3 did come back high , it is unlikely to be anything to do with your Levo / T3 dose (when t4 level is too high for the individual, then the deiodinase will convert less T4 to T3 and convert more of it to reverse T3 instead... but surely there is no way that your below range T4 level is too high for you, so if you did have high reverse T3 it surely can't be due to too much T4 .....There are many many other potential reasons for high reverse T3.
It's likely to get tricky with NHS endo involved, realistically you risk them asking your GP to stop prescribing your levo since you never had a clear hypo diagnosis from NHS , just a helpful GP willing to let you try it . But if you really do need to let them get involved to investigate nodules / swollen thyroid etc i can't see anyway round it.
probably too late now , but if it was me i would try and get thyroid meds sorted out first and stay well away from NHS endo until you have sorted out a dose of levo / T3 that gives much better looking result than the ones inthis post.. and given it time to see if that improves how you feel .
my gut feeling is that increasing T3 to 20 is likely to bee too much T3 and not enough T4.
p.s i'm trying to gauge whether this fT3 result of 4.7 is showing a mid point of you daily level or a lower point .
is this fT3 test 8-12 hrs after a full 15mcg dose , or did you split T3 into 2 or 3 parts ?
Thanks, I did test after splitting dose into 3 previous day last dose 11 hours before blood test
I have increased the levothyroxine to 50/75 mcg alternating as I was too high on 75mcg.
I’m not sure about the 20mcg of liothyronine either but the doctor said she like to get people to 5 and I do still have symptoms.
The nhs endocrinologist is reasonable and happy to discuss, I’ve been open about how I’ve gone about things so I hope she won’t get arsy with me. I’m just trying to get better after all. We will see.
I was also told by doctor that I probably don’t need t4 and may feel better on t3 only
I need to look into this but I’m from a family full of hypothyroidism on very high doses of levothyroxine, all nhs gp treated, and I do wonder whether they have to take more levothyroxine in order to increase t3.
I get my T3 from Roseway Labs, initial phone consultation with their pharmacist prescriber is £50 follow ups £30. Email prescription with payment link I think my last lot was £75 for 3 months supply. All legit & legal 🌱
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