So, a couple of weeks ago following a rubbish telephone conversation with my Dr, where she refused to up my meds as she decided my TSH meant I was over-medicated and she needed to refer to endo, I wrote her a long letter. Letter basically explained why I believed I was actually under-medicated rather than over, and included lots of information I've learnt from here over the last few months, along with the article from Pulse that is always referred to, and a medical journal paper by Dr Toft from 2017.
Apparently she forwarded this to the local endocrinologist when she sought advice. However, local endo clearly doesn't give two hoots or understand, as has come back and told her to keep me on same level of levo (150mcg). I guess I should be grateful it wasn't reduced!
I also asked in the letter that if she thought it was in my best interests to be referred to endo, I would like to be referred to one of two I listed, which were on the thyroid uk list. They're not particularly local to me, but within an hours drive. I was phoned up by an admin person at the surgery to tell me all of this, and when I asked about being referred, she said I had been, but could not see who to. She sent the Dr a task asking her to confirm, but so far Dr hasn't replied (she re-sent the task today when I phoned again to chase up).
So, am stuck feeling crap on 150 mcg of levo, and who knows when (and to who) a referral will come through. Not too happy really, but not sure there is anything more I can do unless anyone has any bright ideas?
I started gluten free on Saturday before someone suggests it! Going well so far, but obviously no change to how I feel given it's only been a few days, and I know it can take up to 6 months.
Did do a post with my last results on, but just for reference for anyone who doesn't want to search my TSH was 0.03 (0.27 - 4.2, T4 was 18.3 (12-22) and T3 was 5.1 (3.1-6.8). Done under usual fasting conditions and levo not taken since previous morning. I have Hashimoto's.
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Fluffysheep
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Well it's clear that you are not overmedicated, just a shame that doctors are so ignorant and keep us ill. This is precisely why so many of us self source/self treat.
Going gluten free made a huge difference to my gut issues, muscle and joint pain and ability to lose weight...my main residual symptoms are mainly low energy and hair loss. I’ve switched to NDT just this week to try and address this.
Just because you ask and your GP refers you to a particular Consultant it doesn't mean you will see that Consultant on the day and you won't know until you turn up, I've been caught out many times and stuck with a junior doc !
I know. But figure if I get referred to a clinic with an endo that actually knows what they are talking about, then maybe the junior dr's under them might have slightly more of a clue. I can live in hope!!
Got to be better than my local endocrinology department, who clearly have no clue.
Don't hold your breath ! Twice I've seen junior docs on their first day in Endocrinology 🤦🏻♀️ and I had previously seen the very experienced chief Endo before so I knew he was good.
Your GP is able to make a named referral, and can make referrals "out of area". The reason I say that definitely is because my own GP told me.
I had seen a local endo who was incredibly laissez faire about the whole situation, declaring he didn't think "we"'d ever get to the bottom of me feeling dreadful.
He lived, but it was a close-run thing.
When I gave my GP the feedback, she asked if I wanted to see someone else, and told me she would make a named referral, and I could chose to whom and where I wanted to be referred. (She was a real keeper, but moved area.)
I do hope you find a way forward.
I am on a trial of T3, with my review tomorrow. It's happening my telephone, which isn't entirely ideal, but it is our current world.
I know, I know! I was all set to ask for a ferritin test with my other bloods, but because it turned into a phone appointment everything went awry, and we didn't even talk about bloods. I've since been told I need bloods in 3 months, but the form has already been done and sent to me. It's only for usual thyroid tests. Was told all this by admin person, not Dr.
As for getting same brand of levo each time, again, I think that is probably a discussion I need to have face to face, as phone appointments aren't conducive for anything unfortunately. And I don't exactly have evidence that different brands are a problem (I've felt continually crap since starting meds, no change at all) and I'm a little bit wary at the moment of coming across like a problem patient, especially after the letter I wrote!
Someone, a medical practitioner that is, should figure out why your TSH is so low while your free thyroid hormones are slightly above normal healthy and yet you don’t feel well...... They clearly take one look at your tsh and assume you are over medicated if there was no tsh test result your free thyroid levels would look ok.....
My Endo appt took three months with one cancellation along the way. Appt was rescheduled to first day of Lockdown so telephone consultation only, Endo said nothing wrong with recent blood results (I have Hashis and results indicated poor converter) from symptoms I explained over the phone Endo agreed May be high cortisol and in fairness suggested further testing so I braved going out for repeat bloods a month ago, phoned for results after 3 weeks of waiting patiently and med sec confirmed he hasn’t even looked at the results yet. Asked med sec if she could confirm bloods were normal and she said Dr needs to review them. Chased but no response yet.
I have now bought a pill cutter and reluctantly and tentiveley increased my dose by 25mcg to 125 mcg levo.
Might be initial response although 5 days in and my mood has lifted (not too much) and skin problems reduced and not sleeping /exhausted from early evening for first time in years.
I am not advocating this action for anyone else as It is a risk and a personal choice and I continue to monitor for signs of hyper swing although all fine up to now. When I do eventually speak to Endo I will be asking to be referred on after securing formal increase.
BTW, it was my hairdresser who first suspected high cortisol due to changes to my hair as it had developed defined kinks like her horses who have cushings
GP never once considered this in over 2 years. My hairdresser also nudged me to push for initial Thyroid diagnosis as previous GP was initially stating bloods normal- she was concerned by amount of hair being lost each month. If only my hairdresser could work in the endo dept or maybe I would be better off with a vet!!!.
I know there are risks to what I have done and I will be careful and get bloods repeated sooner, it is a personal choice but I feel so much better, I have more energy and have been laughing and joking like my old self without the dreaded mood swings.
Good luck and keep challenging the professionals, hopefully we will all get the help we need if we keep pushing.
Hi, I wouldn't get bloods done early if I were you. You should wait for 6 to 8 weeks for bloods to steady after an increase. If you feel good you have obviously done the right thing for you. Long may it continue. Jo xx
Mine too although the ever increasing kinks are now slightly better at hiding the thinner patches (the lockdown roots aren’t helping either). The hair loss has slowed for me recently and not to the extent it was initially which is a relief.
Rapid weight gain, chronic fatigue, insomnia, skin issues (petachaie, hives, peeling, acne), mood variances ( swings, irritability, low mood, confusion, brain fog, memory, processing), , joint pain, carpel tunnel.....symptoms lessened although still persist.....,..., but bloods normal so carry on and listen to the good doctor.......!,
It took me 2 yrs of pushing to get a diagnosis and commence medication I am grateful that the frequency/intensity of the symptoms are now gradually reducing although almost 2 yrs post diagnosis I still have symptoms and am still far from well/ normal.
Medics still guided by TSH result only.
I am very new to all of this, before finding this site was utterly clueless, still learning with each post and don’t know what I would have done without it.
I really don’t have much faith in the medics and having this resource with the knowledge and support gives me the confidence to keep pushing.
Don't worry excessively about the dose increase you have given yourself. You would know if it were too much. As it is you feel a little better, which is positive. Before you get to the 6 week mark for testing, you might start to feel worse again, but this often happens as we increase doses and could mean you are ready for another dose increase.
You aren't going to harm yourself doing this for a couple of months, it's sustained over medication that would become a problem. You have time to experiment and most of us have to do that.
Thank you, that is reassuring, I do feel a lot better and will monitor...,, my OH says this last week has been like having the old me back and it has started to feel like that....,,-appreciate you taking the time to reply.
Going gluten free helped with weight loss and gut issues. I used to get a rash from handling (wheat) flour. Gluten free flour is so silky and pleasant in comparison! It may eventually give you a bit of an edge with dosing (once gluten free your gut may be more responsive) but don't hold your breath for some overnight result! Taking selenium could help with conversion and antibodies. Your pituitary may be misfiring as your TSH is low in relation to your hormone levels. This could be for a couple of reasons...
i) issues with the pituitary/ hypothalamus - it'd result in dodgy levels in hormones in general (not just thyroid)
ii) adrenal exhaustion or autoimmune adrenal issues. Look up adrenal fatigue and its causes. Dr Myhill has a good section about this on her website.
I can see that you're converting reasonably well, so the selenium and Magnesium are helping. Some things to add would be for the adrenals....zinc, vitamin C and p5p (bioavailable b6) and maybe some extra b5. Another thing is don't avoid salt and keep well hydrated.
I take a Zero tablet after my dog walk to replenish electrolytes.
Sorry you're going through this - I know what it's like to depend on doctors who don't come through for you. I'm based in the US, so what I found to be helpful is going to a naturopath. In my experience, they care more about quality of life than MDs, they have the same ability to prescribe meds, and they take the patient's symptoms more into account when making treatment decisions. Not sure if this is an option for you.
Also, I would say that your thyroid levels look pretty good. People here may disagree, but your TSH is very low, and your T4 and T3 are in the upper end of the ranges. You can try upping your thyroid meds, but it may be time to look at other potential problems (other hormones, nutrients, lifestyle/diet, etc). The answer is always somewhere.
Go on diet for low blood sugar - hypoglycemia. Try. Only low GI and low insulin raising carbohydrates. 150 g daily divided on many small snacks. Never big amount at any meal. One or two spoons. Nothing sweet, even sweeteners. No bubbles.
If your FT3 in on upper third of normal level it is big question in which bush is a rabbit. Iodine lack? Very similar symptoms. Hormone resistance?
Chack D vitamin, B12 vitamin, minerals. Estrogen progesterone ratio ( estrogen dominance). Go step by step don't try everything at time. To see if something helps. HgA1 will show if you are mybe prediabetes. Many people with hypoglyceamia is. After years it shows that I'm that case. But all tests well. Blood too. Diagnose made by symptoms and proven by diet.
Fine tuning of hormones should be done by very small changes in dose every few days on base of symptoms.
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