Latest thyroid results and symptoms

I had my thyroid tested a couple of weeks ago and it showed my numbers had improved again. Quick recap

TSH was 9.28 last May.

FT4 around 14.9

FT3 about 5.3

I went on 25mg of levo. Results came down but silly me didn't accept an increase (I had medication phobias after serious reactions to meds in the past but I am overcoming it now. I then accepted an increase in September and by November my TSH was 2.6, FT4 about 18 and FT3 around 5 still. I felt much better. I suffer from SADs and as soon as end of November hit my mood went down hill and my anxiety became severe. I had an awful 6 solid weeks. I had severe daily physical anxiety, low mood and I could barely eat and lost 8lbs. I feel so much better since March hit mood and anxiety wise, thank goodness but that couple of months took it's toll on my body and my chronic fatigue issues hit hard again.

I had thyroid re tested in January and the TSH had shot back up to almost 6 and FT4 to 17. I then went up to 75mg of thyroxine. Last test 2 weeks ago showed these results..

TSH 1.7

FT4 19.7

FT3 5.0

GP is keeping me on 75mg and we are re testing in May to see how I am doing. We are staying at that dose as my TSH comes down quick just on 25mg incriments and a jump up to 100mg could well take that TSH very low and cause over active type symptoms. It came down in just 7 weeks from 6 to 1.7 so I don't want to take that risk. If the TSH doesn't stay supressed at 1.7 and increases again we are increasing to 100mg.

Ok, now some questions. Is it normal for a dose to bring down the TSH but then when you re test again 8 weeks later it hasn't kept it down at that supressed level? is it normal for it to keep bumping back up and will this eventually stop happening and you can stay at a certain dose?

Also, I started with chronic fatigue about 20 months ago, my GP ran 2 full MOT's of bloods and nothing was found. I have PTSD after an attack 4 years ago and still suffer anxiety and stress due to it (I am in therapy) which my GP thinks' could well be taxing my body causing the daily fatigue. Since they found the underactive thyroid early last year I had huge energy crashes, if I say go out to a park with the children for too long, or over do the house work or if I see my extended family including my own mother I have a huge crash the following day. A crash is where my legs go so weak in my thighs, i feel light headed and almost dizzy/woozy and my whole body feels weak and dained and even walking to the toilet fills me with fear. They happen on exertion or like I said if I see family (it was my brother who attacked me and family resent me for not forgiving him so seeing them is anxiety provoking).

Since the chronic fatigue hit i developed agoraphobia purely due to isolation being so fatigued and feeling so ill. So I have been this bad with the crashes, fatigue daily and just generally feeling blurgh since early last year. My GP blamed the crashes on stress, anxiety or depression, never blamed the thyroid. He didn't seem concerned I got the crashes every couple of weeks and had daily fatigue. Then in January he rang me and said he wanted to run more tests as he had suddenly decided there must be something else making me so fatigued daily. He first became obsessed I had diabetes but 2 tests have proved him wrong, then he assumed addisons disease but my saliva cortisol is high, he then suggested chronic fatigue syndrome which I suggested long before the thyroid issue was picked up. He has me repeating test after test. He found my sodium was low in November last year at 129, but 9 days later it was back up t0 138 but still he makes me repeat it and next week I am again, even though 3 weeks ago it was 134 in a range of 135-145. My neutrophils came back a little low at 1.6 so I have to repeat them next week which is fair enough I understand repeating them but he is making my anxiety so severe.

I have found the energy crashes and daily fatigue very worrying for over a year now, everytime a crash happens and I have to have a day of rest I have severe anxiety all day and sit and cry because I have no idea why they happen and my GP has done nothing to reassure me and now he suddenly is panicking about them which is making me very anxious about my health. My last 3 MOT's have been fine, only the sodium low once. I had a recent full blood count which showed my neutrophls low but rest of it was fine. So hopefully that's a one off and nothing to worry about but of course my GP told me I was at risk of infection overload if I got ill right now I am a nervous wreck and dread talking to him the lat 3 months because he is making me so anxious going from one test to the next. In November he tested everything adn he said if they came back normal then it surely was just chronic fatigue. I had full bloods, kidney and liver tests, glandular fever, nuclear antibodies, blood films. HBA1C, chloesterol, gout, b12, folate, ferritin, iron... you name it I have had it tested. All fine just sodium goes a tad out of range here and there but at the moment it's 0.1 under and he is flapping and scaring me.

My husband and friend think I need to change GP in the practice as he has no idea what he is doing, he blames my fatigue on mood and anxiety then says he thinks it's something more sinister. He then goes from one disease to the next. This is why every crash and ever day I feel fatigued I sit crying as I have no idea what is wrong with me. Can I really blame this on thyroid and tell my GP do leave me alone with that needle? I can't take anymore tests, I am turning into an anxious wreck

This week we had norovirus in the house, I made hubby stay in the bedroom and I spent the week taking care of the children, myself and the house. Thankfully none of us got it but I ran myself into the ground cleaning like a mad woman because my GP made me afraid if I caught an infection I'd have infection overload. By Thursday I suddenly crashed and landed myself in bed for the day. I have felt a little better since the crash but still feel worn out and weak legged. I walked up the stairs today and had to have a little rest on my bed before I carried on, that's why I worry. I am 37, I should be able to walk the stairs without some days being so out of puff and heart pounding. I have only had 5 hours sleep every night this last week due to being so busy and sleeping in my sons bed as hubby had our room. Maybe it's all caught up on me.

Sorry this got long, I just feel confused and worried why I have chronic fatigue, it's daily but then some days are worse than others. I am better than I was a year ago as I was bed ridden most days and i have felt better on levo but since the 75mg increase I did feel a little worse so wondered if it didn't suit me but maybe it's still the effects of the winter depression I seem to suffer the last few years. If anyone has any input on what to do about my GP or my thyroid results I'd appreciate it. I just feel at a loss with him right now.

Julie

[mischa]

When you say you have high cortisol, have you had your adrenals checked with a saliva test? This wil show how your adenals are working throughout the day. High cortisol will cause symptoms of fatigue and anxiety.

High cortisol can be addressed with adaptogen herbs such as Holy Basil.

[Hidden in reply to mischa]

Hi

Yes it was a Genova saliva test. All 4 samples over the 24 hours were slightly over range and Genova commented it looked like a profile of psychological stress which yes that makes sense as I have chronic anxiety and stress in my life. I have had to cut my family off as they caused most of my crashes and anxiety last year, I haven't seen my mum in 3.5 months and feel so much better for it but now I seem to just crash on doing too much, like this week but I guess this week has been stressful.

I maybe need to try the herb.

Thank you

Julie

[mischa in reply to Hidden]

Try and keep stress down as much as possible. I know sometimes it is easiet said than done.

I saw a private doctor for stress and he advised meditation - it only takes a few minutes a day to begin with and you build up. The thing is, it works. He also suggested yoga. These calm the system and when practised regularly you start to notice changes in you well being including anxiety. But it's no quick fix - it takes time but well worth it.

[Hidden in reply to mischa]

Thank you. I used to do yoga daily then my fatigue took over, I manage it a few times a week now. Just in the evening for 15 minutes. I also used to do meditation daily, it is something I need to start again.

Thank you.

Julie

[cwill]

Julie I feel for you as I was diagnosed with CFS then symptoms and really severe issues were totally ignored. Both over enthusiasm and being ignored can be very harmful, even more so in your GP. I spent 8 years bed-based and very light sensitive so have plenty of experience of trying to entertain myself and doing anything that my system allowed to stop dwelling on how ghastly everything was and simply crying.

I developed a version of bed yoga involving breathing exercises and some very basic stretches. This was not daily but on those days that my body had time to do the work and then rest. I also did a few hours of drawing/painting and hand sewing. There was something rather meditative about hand sewing that after 4 years resulted in a quilt. The drawing/painting was also a great way of focussing just in the moment. I would say that bar illness/emergencies you should try to build in a routine that allows a lot of rest and if you can identify anything that calms and cheers you make that part of everyday. I also had a rule that I had to find something that made me laugh every day, often harder than it should have been but certain comedies and you tube clips served a purpose.

I am sure that you are doing your utmost not only to keep the family ticking over but to cope with the anxiety. My family needed to be managed to allow me the peace I needed which in itself felt stressful. Since I have recovered a bit i have been using EFT. Don't know if you have come across this technique but it fitted into my cheap and cheerful criteria so thought that it was worth a try. I agree with the posts above vie read the GP but coming up against health professionals that aren't helpful or even knowledgeable adds to our disappointment, shock and obviously anxiety. You will get some clarity and you will get a clearer picture of what you need but wouldn't it be better if this came in partnership with healthcare? Stick with it and wishing you well.

[Hidden in reply to cwill]

Wow thank you. I feel you truly understand.

What do you suggest I do? Did you get as cfs diagnosis? My gp .has no idea what to do. He just goes from disease to disease and never blames thyroid. He did a whole load of bloods in November and said if they were clear he would diagnose cfs but hasn't at all.

I feel at a loss of what to do as he is adding to my anxiety and I'm sick of constant blood tests getting me nowhere.

Thank you for your kind reply.

Julie

[cwill in reply to Hidden]

It sounds as if you are still getting to the point of being on enough T4 for the TSH to be below 1/suppressed so it looks as if you need an increase in dose. But as everyone on here says you might be lucky in that a doctor will allow a suppressed TSH or you will find that after a very short time on the correct dose for you they tinker again. And you might be unlucky enough to find that T4 alone is not for you. But I would strongly advise that you find a GPto work with at least in the early stages. Blood tests private or NHS will involve taking blood so perhaps is the place to start.

My ghastly GPs were totally dismissive and frankly rude/unprofessional when I struggled in to see them alone. So never go alone. Get a friend up to speed or take your partner but do get them to understand the key points you want to discuss, the relevant details and the preferred outcomes for the appointment. If attending surgery is not really possible or if you are wasting lots of energy then write a letter outlining your concerns and asking for a written reply. They don't like this very much but it was a way to put everything in writing and can make complaints etc easier as there is no discrepancy in memories of the event and verbal conversation.

In my case they diagnosed sub clinical hypo but despite clear evidence and guidelines actually chose to go with CFS diagnosis rather than try to treat me, with me bedbound with all symptoms and as myzodeamic as they come. This is contrary to all guidelines but hey this person is clearly mad right? So the GP was right not to diagnose as he realised that he hadn't got to the bottom of the issue.

I recemmond the blog and website of Trudy Scott and Kelly Brogen to make sure that you are doing what you can to be ready to get better. Also see Dr Myhills work as she is really good at explaing all body systems and how we may fall into dysfunctioning mitochondria. I think that the disappointment and anxiety of simply not being diagnosed or helped greatly adds to the bodies burden. We are good at this when some diagnoses are given but most of us on here sadly do not have positive experiences to report.

Re the blood tests these really do need to be performed so have you had appointments/calls simply to discuss this issue? You need regular bloods until your dose is established but can get private more comprehensive tests performed and ask for the surgery to take the blood. I would certainly let them know that unless an emergency you want all bloods performed at regular intervals by someone very skillf and used to dealing with needle issues. Therefore any monitoring or other tests that require blood samples need consideration before you are due a test and sufficient drawn on this occasion to do all relevant tests. Would it help to know that you have one test appointment periodically even if they need to draw a larger amount? In my first few years I was having every colour of test bottle regularly but as I couldn't get there very often it was no extra effort for me to be there for 20 seconds longer to do everything.

Resist a CFS diagnosis and insist that they actually treat you and investigate all your issues. We appear to have to manage the whole health team/benefit system whilst at our lowest ebb and brain addled, whilst also working out our own diagnosis and treatments. Possibly the hardest thing I have done yet.