You may remember I posted earlier in the year about getting a trial of T3 and how awful the endo is. My latest bloods, taken around 09:00 with 24 hour T4 gap & 12 hour T3 gap are:
TSH 0.34 (0.35 5.00)
T4 13.3 (9.0 - 21.0)
T3 1.7 (0.9 - 2.5)
These results are on 75mcg T4 & 20mcg T3 (split into x2 doses)
I have started gaining weight quite rapidly again and my mental health has plummeted over the past year - albeit that I have some ongoing emotional issues that don't help.
Anyway, in February this year when I was feeling really terrible, I asked for a referral to the Endo and for psychotherapy as I do believe in the brain/body link. As I say my mental health has gone very low over that time & I have spent quite a lot of that time considering suicide. I finally saw a junior doctor in the Psychiatry team earlier this week. He spent over an hour "taking a history", then went and had a discussion with his senior and came back to tell me that I had nothing from a psychiatric point of view so they suggest I seek counselling. I was pretty emotionally exhausted having talked about all manner of triggering things and may have misinterpreted what he said, but I heard "go back to the end of the queue" and told him he'd wasted my time and flounced out :/
Anyway, back to the Endo who I saw yesterday. He says that my results now show that my pituitary is happy with the hormone level in my body - as evidenced by the "spot on" TSH! My memory & concentration are now so bad that I recorded the consultation so I would know what he actually said later. He told me first of all that he didn't decrease my overall meds, but increased them because T3 is x5 more potent that T4. Later he told me that "T3 is x7 more active than T4". He talked all around his previous points about how there is not enough evidence of sustained benefit on combination therapy and most people revert back to monotherapy after finding that initial benefit wears off. He said there will be no fluctuation in autoimmune thyroid disease and coyly suggested that weight gain and continuing to feel unwell were not just about thyroid levels - he finally managed to bring up mental health and I saw where we were going I told him I have no objection to trying different approaches and that I was trying to address mental health and he suggested that I may feel physically better with CBT! So there you have it folks, the treatment doesn't work, so the patient must have poor mental health. I suggest it's entirely the other way around - being kept unwell, not listened to and living a miserable existence may lead one to become mentally unwell!
I'm sorry this is another long post and thank you if you've read it all. The final agreement "against my better judgement but because I'm listening and because you accused me before of only treating you by numbers, I suggest we compromise and increase your T4 to 100mcg. But if it causes suppression of your TSH, we need to seriously consider whether it was going to cause more harm than benefit and potentially cut it back. But let's assess your response to that".
Seems to me that with T4 less than 40% through range and T3 50% through range, I'm anything but over replaced but that if I start to feel better with the extra 25mcg of T4, my TSH will be suppressed again and he will decide to stop the combined therapy. Other than trying to find a way to manage my own health, I feel I'm on an NHS hamster wheel of frustration.
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tj61
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I'm sorry it was such a rubbish consultation with Endo. I think it was actually a good thing that mental health expert cleared you of a mental health condition as it gives you a clearer picture of what to work on.
I agree that if you simply can't get well then it begins to affect your mental wellbeing but that's different from a mental health condition. It's possible you feel that you will never solve the problem and feel in despair. I expect a lot of people here will have been through that.
The important thing to hold on to is that people here have figured out how to get better and you can too. I found a good registered hypnotherapist helpful in focusing my self belief in solving problems and regaining determination to seek and secure solutions. Family and friends support is also very empowering.
Have you addressed your gut health? It's often a problem for people with thyroid conditions. There is a gut brain connection, not sure how it works but read Slowdragons advice on improving gut health.
Rather than focusing on weight loss, focus on gut health and improving nutrient absorption from food.
Hi, thanks for your reply. Yes I have gut issues - did the triple therapy for H-pylori but I reckon that doesn't necessarily kill off the H-pylori but definitely kills off all your good gut flora! I have been eating gut friendly broccoli, drinking green tea and taking kefir when I can. I find that fermented dairy is ok for me but milk, cream and ice cream cause issues. I asked the endo if there was any explicit information that says I was tested for antibodies but he couldn't find anything, so he says he'll get them to test for that next time. I am so low in energy, motivation and positivity at the moment I don't feel able to look at going gluten free but if the tests do show antibodies, I'll seriously look at it. When I did paleo for a long time I did feel somewhat better, but generally I have become gradually more unwell over the past 13 years or so since diagnosis, so I'm not certain diet plays a huge part for me.
Although they said they'd check for vitamin levels, they actually haven't and I don't think they are going to. Since I am unable to work I'm pretty poor, so it would be hard for me to find the money to pay for private testing or meds but I may end up having to try to do that - I guess I've been stubbornly believing my GP or the endo should do that but that doesn't mean they will.
I supplement D3 K2, magnesium and eat brazil nuts for selenium, I also eat pumpkin seeds and dried fruits.
I don't think I focus on weight loss so much as not gaining any! As someone who gained a huge amount of weight in a short time when my hypothyroidism was untreated/inadequately treated, I have never managed to lose most of it and just don't want to gain any more!
I understand about not wanting to gain weight but if you get your stomach sorted out it will help you to absorb nutrients and your whole system will become more efficient.
You could look into probiotic foods and try them out. Kefir sounds good but there are others you could try. Asian foods have a variety of probiotic products that are non-dairy. Research on Internet first.
Going gluten free is definitely worth a try as it's easy if you simply eat fresh foods. It's not expensive if you buy what's in season and avoid factory made gluten free food.
Essential to test vitamins so maybe ask for Christmas present of test kit from reliable lab? Don't rely on GP to do tests. You may find low nutrient levels if you have an absorption problem.
Brazil nuts may contain very little selenium unless they specifically state 'grown in selenium rich soil'.
I agree with Angel of the North to be wary of CBT. It didn't work for me at all, it just delayed getting the right help and made me feel helpless, not empowered to do something about my situation and deal effectively with the health care system. You need to feel empowered to make changes like try going gluten free and work out how to get vitamins tested.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
I asked my GP and the endo to test for all of the above but they haven't. Rules are slightly different in Scotland but I have no difficulty in getting printouts of test results. Our online patient services have changed and are less useful than previously, just an appointments and prescription ordering service now.
Many of us need good levels of FT4 and FT3.....so yes increase in Levothyroxine may improve both
Getting bloods retested 6-8 weeks later
Looking through previous posts couldn't see any vitamin results or thyroid antibodies test results
Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?
If you have Hashimoto's are you on strictly gluten free diet?
What vitamin supplements do you currently take
When were vitamin D, folate and ferritin last tested
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thank you for your reply, I think I covered most of it in my reply above. But yes I agree I'm undermedicated but since the endo doesn't, I'm going to end up trying to find my own solution. And yes, I do the tests as suggested, Thanks for always being so helpful!
I'd like to slap that endo upside the head. TSH is not a good guide to thyroid hormone levels (as you can see) and how does he know your pituitary is behaving correctly? Could be all in your head - your pituitary! Be wary of CBT. My friend died by being brainwashed into believing that she wasn't in pain - she was - a twisted gut and it killed her. However, I found some counselling (which might have been CBT - don't know) useful when I was being bullied at work
I'd like to slap him too! What made me feel really awful was realising how I talk to him to try to avoid causing offence and he is so patronising. Ugh, it's soul destroying!
Haha, yes good plan! He knows I don't believe him and thinks I'm an idiot. I found it very interesting that in one of his answers to me he said insulin instead of thyroxine - shows where his interest and knowledge lie I think
I didn't address what you said about CBT; I think it can be helpful in changing how we view things but I do not believe it is all powerful and don't trust anyone enough to be talked out of what I know is real in my body
Isn't it strange!!! that they can make a diagnosis.
If they're going to diagnose a mental health problem, they go by clinical symptoms alone but for the poor thyroid gland symptoms (they know none) are completely ignored and it is just like 'painting by numbers' i.e. you may produce a nice picture or botch it up;
I do not understand what these Doctors have been taught about thyroid disease because years ago we were treated by symptoms and now we are treated by what the TSH indicates which does not give an accurate indication of thyroid function. In years to come Doctors will look back and realize how badly they treated us. I wonder if Doctors actually care about us?
I too was offered CBT instead of good thyroid advice & medication. I went for lots of sessions and tried hard with the positive affirmations and visualisations suggested by the psychotherapist. However, I only started to feel better when I followed advice on this forum to get my thyroid & vitamins optimal. I still practice mindfulness, so the CBT wasn’t a total waste of time.
I do feel that if my GP/Endo had explained to me that anxiety was a symptom of a thyroid condition, I wouldn’t have needed the counselling. I’ve had far more support here than I’ve received from GP, Psychotherapy or Endo services!
Unfortunately few doctors or professionals are truly aware of the affect a wrong thyroid replacement dose can have on patients. i.e. dose is too low, we remain symptomatic but as they know no clinical symptoms they're happy if result is within range. They're unaware the aim is a TSH of 1 or lower and both 'frees' T3 and T4 need to be in the upper part of the ranges.
Hi shaws, that is so true; I gave a list of symptoms to the endo & he said he didn't think they were thyroid symptoms and many are listed on NHS website! I realise they are lacking knowledge & expertise, but I wonder why they appear to lack compassion & a desire to actively try to help people!
It seems as if they play 'a numbers game' i.e. if we're in a range we're on a sufficient dose but they don't seem to realise that the dose (when optimum) is supposed to relieve all symptoms.
If we're female and put on our make-up it is assumed we 'look' o.k. but lipstick or eyeshadow is for our own morale as we feel so unwell.
They're supposed to treat symptoms but instead only look at a TSH result:-
Yes I agree, this site is invaluable and always offers good support. I think there could be a place for CBT for helping challenge unhelpful thinking about chronic health conditions but I seriously do not believe it can resolve physical problems
I have a mindfulness meditation app that I find very helpful for stress relief and relaxation and can heartily recommend Tai Chi for similar benefits.
In the end we need better training for GPs and Endos so they can look after people properly and stop us either living a miserable, ill life or ending up paying for our own medicine and testing.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I told him I have no objection to trying different approaches and that I was trying to address mental health and he suggested that I may feel physically better with CBT! So there you have it folks, the treatment doesn't work, so the patient must have poor mental health. I suggest it's entirely the other way around - being kept unwell, not listened to and living a miserable existence may lead one to become mentally unwell!
HELP PLEASE. I need good reasons on why my Endo should not pull the plug on my T3 treatment. 
Endo Handed My Care Back to GP.
Endo wants to remove all drugs to see how sick I get
My endo has stopped listening... I feel desperate .
