My last post seemed to cause confusion so I'm going to try to be clearer with this one. For clarity (and with respect and thanks to those who took time to respond), I know that people are often misdiagnosed but I definitely have Graves so I don't need any comment on whether this diagnosis is correct.
Background and questions:
I was diagnosed with hypothyroidism last May 2017 after many months of feeling unwell with various hypo symptoms. It took about 8 months of many blood tests to fit the criteria of hypothyroidism. During this period of 8 months, my T4 was consistently about 11-12 (range 12-22), and my TSH gradually increased until it was over range - this took 6-8 months. When I was diagnosed my T4 was 10.9 (12-22) and my TSH 4.8 (0.27-4.2).
Went on levo and gradually increased and started to feel better over time.
Then in December I started to get palpitations followed swiftly by hyper symptoms. I tested my thyroid levels (after being fobbed off by hospital and a GP!) and my T4 was 30.2 and T3 11.6 and TSH suppressed. Eventually I was diagnosed with Grave's disease with a positive TSI antibodies test (0.8 - range 0 - 0.4). Please note I have never tested positive for TG or TPO antibodies, but endo suspects I have hashimotos as well as Graves.
When I came off levo my T4/T3 levels naturally dropped to around the top of the reference range - fluctuating over and under the top - TSH suppressed. I was getting fluctuating mild hyper symptoms.
I was eventually put on a low dose of carbimazole. Shortly after starting carbi I had two/three weeks of feeling normal again (the first time in about 3 years!) but then I started to develop hypo symptoms. I suspect that I felt well initially as my levels dropped to the top of the reference range but as they started to decrease further hypo symptoms started.
So after 7 weeks on carbi, my T4 was 12.1 (12-22) and my T3 4.6 (3.1-6.8) (TSH 0.02 (0.27 to 4.2). Endo agreed T4/T3 were a little low so reduced carbi from 5mg a day to 5mg every other day. After another 7 weeks, my T4 and T3 had dropped further to 10.4 and 3.9 respectively (ranges the same). TSH increased to 1.98 at this point. I was then taken off carbi altogether as endo thought I might have "gone hypo again".
However, after 6 weeks on no carbi and no levo, my T4 increased to 12.9, and TSH lowered to 1.44 (ranges the same). Endo then said that this meant I was absolutely fine and my ongoing symptoms must be unrelated to my thyroid.
I went to see my GP, and explained that although my results were in range, my T4 is now about what it was when I was diagnosed as hypo. And also showed her that my TSH had taken 6-8 months to respond to my low T4 (probably more than this actually as I felt unwell for a long time before even going to my GP in 2017). I said I felt I needed levo. She wanted to give my thyroid another 3 weeks for the carbi to definitely be fully out of my system which I thought was fair enough.
Blood test on Tuesday and my T4 has dropped to 11.7, and my TSH has gone up ever so slightly to 1.81. GP wanted to still wait and see. I explained that although I am feeling slightly better than I was a few weeks ago, I am still getting hypo symptoms/am struggling and I didn't really want to wait any longer. On this basis she prescribed me 25mcg.
So my questions are:
- I am concerned that 25mcg is going to do very little and may even make me feel worse and that this will be used as a reason to take me off levo in 6 weeks time. I have toyed with not taking it. Would welcome others thoughts on this?
- GP seems to think my TSH slowness to respond is unusual. Has anyone else experienced this?
- Why is my TSH still so low (it doesn't seem to be responding much at all at present). Could this be due to the Graves or carbi? Is there any evidence that graves or carbi can cause lingering issues with TSH?
- Do I tell my endo that I have been prescribed levo!?!
- At what point, do I think bugger this and self-medicate. It's all such a bloody struggle and I understand why doctors are cautious at not over-prescribing but I am 99% certain that my symptoms are hypo-related, and I know I feel better when my T4/T3 are towards the top of the range (at which point my TSH is likely to be suppressed), I just know it's going to be fight every step of the way getting there. I also hate feeling like I am at the mercy of whoever has the precious prescription pad. I would rather be in charge of my own thyroid! However, there are obvious risks and downsides of self-medicating eg access to medication (especially with Brexit coming up), getting it wrong, doctors refusing to monitor you etc etc etc.
Would welcome others thoughts on next steps.
Many thanks for reading! Sorry for long post.
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MiniMum97
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I don’t really know the answer to your queries although I too have been swinging (from hyper to hypo in the space of 4 weeks) and I understand how it’s making you feel.
I hope someone comes along that can help you more than me😊
Thanks for the reply. It’s pants isn’t it. Been feeling hypo for weeks/months now and it’s such a struggle. At least I had energy when hyper! So fed up with what a struggle it is getting treatment.
I didn’t feel hyper other than being hotter than normal. All my other symptoms have always been hypo ones. I have just started 50mcg of Levo and I am hoping I haven’t gone back to hyper when I am retested.
I had severe palpitations, hot flushes where I had to stick myself in the fridge (!!), shaking, anxiety, energy but tired, angry (apparently according to my DH!). Still felt better than when hypo. Hypo is just soul destroying.
I'm not in the same position as you, as I have central hypo. But my TSH does not reflect my thyroid hormone levels - I have genetic defects that affect TSH signalling and TRH receptors, so perhaps you have the same. My TSH does change a little, but not as expected. I've never bothered tracking it, but it could be that there is actually a time lag of several months as it often rises when free T4 rises and then I'll find that TSH has dropped by the next test (but I'm talking a max of 0.3 variation).
Sorry for delay in replying, I have not been doing so well mentally or physically in the last month. Thank you for your reply. I don't have central hypo but the genetic defects might be worth looking into...
From what I've heard it's quite common to have a sluggish TSH response. I think the thing thats unusual in your case is that you've got the evidence to back it up, so the doctor isn't able to sneer at you - of course they think it's unusual - that's because they turn away a lot of people with me treatment because their TSH doesn't match their symptoms.
You're in a complicated situation, and I think that's why you haven't had much advice At this point you may get a few more responses by people who know a lot about Graves if you split your questions up and make a post with just one question and our Grave's in the title. Hashimoto's is much more common than Grave's on the forum, so there's more knowledge sloshing about!
I'll try to answer your questions as best I can, but I know v little about Grave's specifically.
- You're right that the 25mcg may make you feel worse because it's too low a dose. Unfortunately we often have to jump through a few hoops to get to the next dose increase. Best practice is to stay on a dose for 6 weeks, retest, and adjust the dose. At first you hope this will be increases every time. In my experience the most often I could get was every 3 months. Often a starter dose is 50mcg unless a person is frail, or has other medical issues. There might be an argument for being cautious because of your complex thyroid history. Even if you self medicated you'd probably want to start on either 25mcg or 50mcg, and raise slowly, and you'd always have to put up with a period of possibly feeling crappy - you'll probably feel better or the same at some period in the 6 weeks, it's not just a guaranteed horrible time, it's just something to be aware of that you can sometimes feel worse.
- I think it's quite unusual to get fully stable just from one period on carbi, though I may be wrong about the proportion. It seems like lots of people are on a roundabout with it for some time, and end up getting pushed into one of the more extreme treatments, RAI or thyroidectomy. It's also not common to have both Hashi's and Grave's, so it may be hard to unpick why certain things are happening to you It's worth asking your question about whether your current results could be lingering affects of carbi in its own post to try and find the few knowledgeable people!
- Whether to tell your Endo or not is a delicate balance. You can really only make the judgement by testing the waters and seeing what they might think about it, in order to get the outcome you want. Maybe ask a question like "I really want to try some Levo, can we try that?" And see what they say? If they completely shut it down and you want to try it, go behind their back. If they offer a prescription you like better, take that. It's a bit of a dance trying to manage them! Another tip I was given is not to make big announcements to anyone until I'm 100% sure I want to stick with a treatment and its working for me. There's no point in mentioning the Levo if it's still just an experiment and you don't know if it's helping you. For example I was self medicating NDT for about 6 months before I told my Endo. In particular I didn't want a situation where she would question me and undermine my confidence before I could firmly defend myself with evidence that it was working.
Although a caveat is that whenever you give a blood test they should be able to tell you're taking something, so you might be forced to mention it in conjunction with looking at the results. Depending on how things are changed.
- With regard to self medicating, as a self medicator myself, I think you probably haven't quite got to that point. There are TONS of hoops and nonsense we have to go through to get NHS treatment. But when you're medicating yourself you'll also be doing everything in 6 week bites and having to wait most of the time. Everything in hormones is very very very slow. You don't give dates but sounds like you first went on the carbi sometime over the Summer? I don't think there's any way you could have speeded up any of this by making the decisions yourself, you've actually been on quite a rollercoaster where things moved really fast, even from you first having symptoms and seeing the GP in 2017. Its common for people to get shunted around for years not being diagnosed, and getting better is actually the slowest bit.
Some of the things to think about to make sure you've got self medicating in your back pocket so you can start doing it if the NHS get to the end of the line with current investigation and things stop moving: The first is to get to know the blood tests really well. Sounds like you're already very good on this and know some of your own tendencies already, which is a great situation to be in. Hanging around this forum is great, because you can see hundreds of people's results, and hear very well read people comment on them.
The harder side of it for you will be to find good information about your own condition, what to expect, what little foibles it has. There is LOADS available about Hashis, a little available about Graves, and probably almost none about both (although people pop up on the forum sometimes). I'm in a similar situation because I've had cancer and a thyroidectomy. A lot of the more specific information about being hypo through Hashi's doesn't apply to me.
The final thing I think is really important, and you're making good progress there already, is to have your own plans and ideas about best practice treatment for you. Get really familiar with how self medicator sources like Stop the Thyroid Madness, the consensus on this forum, Dr Peatfield, Paul Robinson, whatever other authors you like, recommend treatment to go, and come up with your own rules of thumb from those. Its easy to start out just wanting to speed things along, or to experiment with loads of things and move quickly, but its very important to go slow and methodical, give each thing a good long trial, take tons of notes.
You can start your notes now as more information is always better. Record your symptoms as fully as you can (so you can recognise changes years down the line), get hold of a good thermometer and take you pulse according to someone like Paul Robinson's system. I do mine morning and night because that's how I started, but that's not the best way to do it.
Personally I think any particular treatment you try, you've got to give at least 6 months, tuning the dose, because these things take a long time. That's probably what I'd advise you to do with your current prescription. Start taking it so you've got your foot in the door, and make sure you get it tuned several times. Wait till things have stalled and you're not being offered anything before you look elsewhere. And by stalled I really mean no prospects at all (doctors may say - there's nothing more I can do for you).
Good things about trying NHS treatment first: Its free, its monitored to an extent so you don't have the responsibility and stress of making life changing decisions for yourself, you don't have the stress of sourcing tablets and supplies closing down etc, and it works for a lot of people.
But also, a big one for me, even if it goes badly and you have several months of going down a blind alley, in self medication terms this is more information in your hands, boxes you can tick that you don't have to try again. And that's almost as useful as finding something that works.
Sorry this is a big wall of text! One little thing I wanted to say is that you haven't mentioned if vitamins have been looked into. The NHS is rubbish at this and will only treat if you're severely deficient.
It's a good trial run of self medicating to make sure your vitamins are sorted and optimal. See what blood tests you have had done, look into Medichecks or Blue Horizon if you haven't got everything, and maybe send off for a mail order finger prick test. This is how I do all my thyroid monitoring blood tests.
The first set of things to look into are: ferritin, folate, vit D, vit B12. People like Seaside Susie and the Vitamin D council advise on how to get these optimal. When we've been sick for a while they can often get low due to absorption issues.
Thank you for your detailed and very helpful reply - pls don't apologise for the "wall of text", it's all helpful stuff and I appreciate the time you've taken to write it.. Sorry it's taken a while for me to respond but I have not been doing so well in the last month physically or mentally. As an update, I decided to take the levo so have been on 25mcg during that time (and as predicted after initially feeling slightly better have felt worse). I am due to be retested in two weeks now.
I haven't told my endo - I didn't really make a decision not to, just couldn't make a decision so didn't. I had already asked him about levo and he said no, go back to your GP to ask about what else it might be as it's not your thyroid! I am almost 100% convinced it is my thyroid, and certainly think that needs to be ruled out (ie my getting my hormones optimal and the seeing how I am) before wasting my time any further NHS resources, so that has affected my confidence in him tbh.
It is a dance trying to manage them - an exhausting and depressing one when you are already feeling terrible. It's so rubbish that it is like this.
I agree that things couldn't have moved faster since my Grave's diagnosis, but that's because I went private for my initial consult so instead of waiting 9 weeks for my "urgent" appt, I booked the appt Friday and saw the consultant on the Monday! Prior to that my first consultation for the Graves was in A&E on 31/12/2017 with severe palpitations, and then a follow-up GP appt in March, after which I found out, neither A&E or my GP had bothered to check my thyroid levels even though I was complaining of severe palpitations and told them I was taking levothyroxine! I only found out I was hyper as I then decided to test my own bloods and it showed my T3 and T4 were really high. If I hadn't known to do this, I dread to think when someone would have got round to checking! I was still taking levo! Really makes me angry everytime I think about it!
Re my initial diagnosis, I actually started going to my GP about my symptoms in 2016 (after a number of months (poss years looking back) of symptoms) but was not diagnosed until 2017, again because I identified my symptoms were likely to be my thyroid from the first bloods I had taken in 2016 (a below range T4), but GP didn't think it was a problem mainly because TSH was not out of range, It took months of doing my own private tests and going back and forth to GP to get my diagnosis.
During all of this debacle, I was referred to a dermatologist, a neurologist and a cardiologist, and I have had 2 MRIs. I've had allergy tests. The amount of blood tests I have had for all and sundry I have lost count.
I agree some people have a slower journey, but I think the above is pretty shoddy actually, and I have lost years of my life so far and no end in sight yet. My life and world has become very small and my mental health and my relationship are really starting to suffer The journey would have been much much longer if I had been the sort of person to just believe doctors, and not do my own research and reading, so the slow speed we have gone at is only as a result of my efforts, not my medical professionals.
The above, plus the practically having to beg for medication is what is making me want to self-medicate. I hear what you are saying and my ongoing frustration has not made me get there yet, but if my GP refuses to increase, or takes me off levo at my next appt, I am really not prepared to wait any longer. Christmas was miserable, I spent most of it asleep, I have had to reduce my hours at work and change my role as I couldn't cope, my relationship is on thin ice. I've run out of time and patience. I don't mind waiting for meds to work, at least you know you are moving in the right direction, it's not getting the meds in the first place and knowing you will have a battle every 6-8 weeks I'm fed up with.
I'm done lots of private blood tests as mentioned above, and check my vitamin levels. Just about to post my most recent ones for further advice on supplementation.
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At this point you may get a few more responses by people who know a lot about Graves if you split your questions up and make a post with just one question and our Grave's in the title. Hashimoto's is much more common than Grave's on the forum, so there's more knowledge sloshing about! 
Thoughts on my latest blood results - saw new Endo today 
Thoughts On Latest Blood Test Results Pls :)
Latest blood test results 
Latest blood test results are depressing 
Latest blood test results
