Here is the letter I plan to send, if anyone has any input or thoughts on the letter or generally about my thyroid/symptoms please comment
Dear Dr Toft,
I am writing in advance of an appointment I have with you on the 28th October. I am aware my GP has already sent a referral letter but I want to provide you with some more information about the situation from my perspective.
In the autumn of 2013 I commenced the final year of my degree at University. The first term was a massive struggle as I battled with the following symptoms: extreme fatigue, cognitive impairment, brain fog, low blood pressure, low body temperature, freezing hands and feet, weight gain and constipation. These symptoms prompted me to visit my GP. The GP ordered a set of blood tests, which came back normal apart from the presence of Epstein Barr virus in my bloodstream. I have never had a period of time where I was laid out with glandular fever so this was unexpected to me. As a result of this, my GP suggested I had Chronic Fatigue Syndrome and/or Fibromyalgia and instructed that I research both as well as referring me to the CFS service.
I took the advice and researched both conditions. This was when I came to understand that my clinical symptoms were indicative of a problem with my thyroid, and also that the standard blood tests ordered by my GP had only measured levels of my TSH. Before I accepted a CFS diagnosis which I didn’t feel was right for me, I went back to the GP and asked if I could have more bloods taken to include my levels of free T3 and free T4. The GP declined, stating my TSH was completely normal at 1.75. She stated if I still wanted to know, I would have to get the blood tests done privately. As a student, this was not easy to afford but I asked for the referral anyway and had my bloods taken at Spire. By December of 2013, these results had come back and showed that whilst my TSH was in range my free T4 was 10.8 (12-22) and my free T3 was 2.7 (3.1-7). This led a different GP in the practice to prescribing me a 50 mcg starter dose of Thyroxine. Within 6 weeks I felt immeasurably better. At Christmas time I considered dropping out of University because I didn’t feel I could pass exams in January as the term had been so terrible. I persevered and the medication started to kick in. I felt completely different and had so much more energy, brain fog disappeared, blood pressure normal, normal body temperature, daily bowel movements etc.
My blood levels were tested at 6 weeks and the GP increased my thyroxine to 75 mcg and then 100 mcg 6 weeks later, in order to get my T3 and T4 at the top of the normal range. This was mostly because I wanted to feel as good as I possibly could. I left university in July of 2014 and returned home to and registered with my local GP. Over this time, I was frustrated with the GP’s lack of understanding of my medication/TSH levels. I took matters into my own hands and started increasing the medication myself (up to 200mcg). I thought this would make me feel better, but it didn’t. I still had regular blood tests, but my T3 and T4 never went over the normal range.
A relapse in symptoms came in October 2014, and I was lucky to get a referral to endocrinology at Musgrove Hospital. The reason I was referred is because a locum GP at the surgery thought that there could be an issue with my Pituitary Gland. This is because despite having such low free thyroid hormone levels upon diagnosis, my TSH had remained low. I also had an Adrenal Stress Saliva Test done privately in July of 2013, which showed significantly elevated Cortisol levels (attached). At the hospital my pituitary function was checked by a Synacthen stimulation test. I also had an MRI scan of my pituitary gland. Both the stimulation test and MRI scan were normal. This has therefore ruled out any problems with my pituitary gland.
For the last year, I have been taking 125mcg of Thyroxine and have not been increasing the dose off my own accord. However, I still don’t feel right. I am extremely tired a lot of the time, and my energy patterns are consistent with the adrenal fatigue type i.e. very tired and slow in the morning and during the day and a huge surge in energy from about 7pm, and often not being able to fall asleep until at least 1am.
Over the past year, I have seen about 10 different GPs, and despite the consultant endocrinologist monitoring the results of my tests at Musgrove, I never spoke directly with her. I feel as though I need greater oversight of my condition, given that it has been such a rollercoaster over the last two years and especially because I still don’t feel well, and I do not currently feel like I have sufficient energy to work full time. This is what has prompted me to research and find a thyroid specialist who can perhaps give me some more insight and hopefully improve the management of my condition.
I look forward to meeting you on the 28th,
Many thanks,
Written by
mk366
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Oh, I do hope Dr Toft will be able to help as he was present at the Scottish Parliament when Lorraine Cleaver as the plaintiff put in a Petition about the disastrous diagnoses and treatment of patients with thyroid hormone dysfunctions.
I do hope you are successful as Dr Toft also has said in a previous article that:
"While taking both hormones it is important serum TSH is normal and not suppressed. If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed.
There is no place for the use of animal thyroid extract in the treatment of hypothyroidism. Although preparations contain both thyroxine and tri-iodothyronine, the hormone content varies between batches."
He may have changed his mind slightly about NDT as Lorraine Cleaver said it was the only thing that made her well.
He might have to stick to the BTA guidelines which make False Statements about NDT and I give you a copy of an article (which the BTA never responded to despite reminders) which refutes their stance.
"In this country recent suggestions, sadly approved by the British Thyroid Foundation and certain senior endocrinologists, have placed the cut-off point now at 10mU/L, well above previous levels of 4 or 5mU/L, which were far too high anyway."
So you can see what we are up against. The USA says:-
Authorities in USA now suggest that 2.7mU/L should be the cut-off point and treatment should be offered above this.
So potentially what you are saying is that Dr Toft is a bad choice for seeing a private consultant? Will he just suggest that because my TSH was normal I should never commenced treatment?
I don't know how Dr Toft will assess you. All I have done is point out what has been published. I hope he will be sympathetic but Lyn Mynot of Thyroiduk.org did write to him (I believe) to reprimand him on his phrase:-
" If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed."
I believe that's because sometimes we have to try a variety of thyroid hormones that are available in order to get well - sometimes different combinations. So I don't like his phrase - if the patient is dissatisfied............
He is physician to the Queen when she is in Scotland so is high in his profession.
I will be very happy for you to have a more than satisfactory consultation and will be interested to know the outcome.
Well done in getting that appointment. I do hope you find Dr Toft helpful.
I have a couple of comments on the letter, if I may. It is very clear in setting out the history of your experiences, symptoms and treatment (and boy, have you had an awful time. I'm so sorry). I do wonder, however, if it might be an idea to leave out the bit about how unhelpful your GP was when it came to getting blood tests. It shows your absolute grit and determination to regain your health, but I just wonder if it might give him the idea that you and your GP are at loggerheads, which might not create a positive first impression of you as a patient as professionals in all fields so often close ranks.
Of course, I have absolutely no idea of his personality - he might prefer somebody to be completely honest and call out the inadequate treatment they've received; I'm very cautious by nature and play things safe, which sometimes works well and sometimes is to my detriment! But I was thinking that the most important thing for him to read and absorb are the facts most relevant to treating you successfully, and he may not have much time in which to read your letter.
To this end, personally, I might tweak this bit:
"This was when I came to understand that my clinical symptoms were indicative of a problem with my thyroid, and also that the standard blood tests ordered by my GP had only measured levels of my TSH. Before I accepted a CFS diagnosis which I didn’t feel was right for me, I went back to the GP and asked if I could have more bloods taken to include my levels of free T3 and free T4. The GP declined, stating my TSH was completely normal at 1.75. She stated if I still wanted to know, I would have to get the blood tests done privately. As a student, this was not easy to afford but I asked for the referral anyway and had my bloods taken at Spire."
to something like:
"This was when I came to understand that my clinical symptoms were indicative of a problem with my thyroid, and also that the standard blood tests ordered by my GP had only measured levels of my TSH. Rather than accepting a CFS diagnosis which I didn’t feel was right for me, I had private blood tests in December 2013 which showed that whilst my TSH was in range, my free T4 was...."
Just a thought, and I may be way off base. For the record, I don't think I could have written anything as clear and well-organised as this is.
Oh yes, there was one other tiny thing that I noticed: you said you don't feel you have enough energy to work full-time. I remember from a long-ago staff-training session on appraisals, we were told not to say "x makes me feel", but "x is [insert fact]", to remove the element of subjectivity.
It's a brilliant idea to send a letter ahead of your appointment, and the very best of luck with it!
thank you so much for this reply it's really helpful and I completely agree with your points. I'm going to change these parts so it appears more neutral and I don't want to seem like I am battling with the medics over things. On the whole I have had some very supportive GPs- 3 in particular. What I am struggling to understand is why my TSH was normal and whether I should have even commenced thyroxine. My thyroid hormones were both extremely low, as in under the bottom of the normal range, and the change in my clinical symptoms was astounding on commencement of thyroxine. I would say that now I don't experience brain fog and my blood pressure and heart rate are normal again. The only thing I hugely struggle with is the fatigue. But then I am able to exercise moderately so I know things could be a lot worse. I think I'm just so confused on how much medication I should take, whether I actually need to reduce it to unsuppress my TSH. On 50mcg my TSH was 0.96 versus 1.75 upon diagnosis, and I did feel significantly better. the increases after 75 have all been my advocation as I believed more would be better for stupid vanity reasons (weight loss) and also cause I wanted to have loads of energy for exercise. At the same time I'm scared of reducing and seeing symptoms come
Back, I also don't currently see a gp who knows any more than me on this subject, and aside from my suppressed TSH my thyroid hormone levels are smack in the middle of the range or slightly towards the top. Arghhhh it's all so confusing!
I'm so glad my burblings were helpful! As for your situation, I'm afraid I'm not knowledgeable enough on the technical side of things (not for lack of trying, but I can't seem to keep it in my head) to understand what may or may not be going on with your TSH as you've had your pituitary examined. Hopefully somebody else will be along who may have some suggestions.
The one thing that does stand out to me, though, is the enormous improvement in your symptoms when you started taking thyroxine, which seems to me a clear indication that you need it. Just to complicate matters, it seems as if there's an issue with your adrenals, so it's always possible you hit the right dose before the increase that went wrong, and it's the adrenals causing the continuing fatigue. I hope Dr Toft might have some insight on this.
And it's not stupid vanity to want to feel better! I encouraged my GP into a levo dose increase from 50 to 75 because I thought that would be the key to my recovery, only for the increase to flatten me with even worse hypo symptoms. I feel better for coming back down from that dose, but I'm still a long way from well (I'm waiting for an NHS endo appointment at the moment). This is not easy!
He's likely to be willing to introduce 10mcg T3 daily in place of 50mcg T4. He's also likely to take no real notice of Saliva Cortisol tests and instead do the blood Synacthen test, only considering the extremes of Addisons or Cushings.
Well done for writing such a good letter, I think it's a great idea and I am sure this will lead to Dr Toft being attentive and helpful (I used to be a Med Sec, Consultants I worked with would have appreciated your efforts and saving their appointment time and seeing your intelligence would have realised you would understand and so spoken fully and openly with you).
One thing though. My last GP over-medicated me and that exacerbated my symptoms, adding in anxiety and a feeling of being drive. Since current GP reduced my dose I have been far, far better.
Also, I don't lose, but gain, weight on thyroid medication and from reading this it seems as if many others do too.
Turning to the CFS or whatever diagnosis, I have a diagnosis of ME which I've struggled with since I was about 30 but recently reading about magnesium think I might just be low in magnesium. Might be worth you looking at, I've had to search different sites to find full info.
Be careful with yourself and best of luck, I hope you are soon fully well again.
In the same article published in Pulse Magazine (26 May 2010) to which Lyn Mynott wrote her refutation of Toft's remarks about problems in the home and workplace, he also stated the following: 'Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable.' So I guess from that you'll, perhaps, have to expect the unexpectable. It will probably end up depending on his mood on the day...
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