I would count myself as part diagnosed. As in not much info coming my way. Had to do what you guys have all done which is help myself- although there have been some pitfalls.
One being that i cut so many food types out of my diet that i'm now scared to add things back in along with dosage changes of prop and carb- never know where I am.
TRAB antibodies 8.5 positive- suggest graves.
Any way was good for a while on 20mg of carb- around at least 3 weeks- resting heart dropped really low so had to reduce prop= they dropped from 120 to 30 pd.
2 weeks later they dropped carb to 10 as t3, t4 were in norm range but tsh still not alive. Was still on and off getting hyper symptoms but only when i added gluten back in- or maybe still hyper???
Got so fed up with eating at home alone and only basic- and i mean basis started adding foods back in. symptoms started up again. Pushed for new bloods as convinced gone hyper- so much so that can not stay asleep, burning and tremors. crying for long periods. first doc rang and said next week- which feels like then end of the world when you are suffering. Husband went in and got a lovely doc to order bloods yesterday and then another doc rang today and said you need to drop carbimazole to 5 but had no other info than that- just said they are going by bloods.
I said very strange as convinced i'm hyper again- then he said bloods in another 6 weeks.
Anyway results haven't been put up yet but his notes on my health record say Norm, t3, t4 and rising TSH.
If I'm missing something all my symptoms are hyper ones.
Can rising TSH cause the same issues as hyper?
will post my full results as I know you guys need them but off the bat and to try to understand- can you have insomnia, hot flushing, tremor with tsh on the rise and T3 and T4 in normal range?????
Oh and anger is so hard to control, completely have no interest in anyone elses minor gripes- not the ones on here i mean - so and so down the road parked in my space type.
Bloody thyroid- what the hell- I was loving life- now it's pants and i hate doing this to my family- they are so lovely.
p.s. 32 weeks wait for a NHS endo- what a joke
Have emailed private one- who works at the same place 1 day a week and then rakes it in- of course! to see if I can actually talk to someone to explain things to me and probably get a lecture of my massive eating disorder i have created by going down too many internet rabbit holes. Although something worked right if levels have come down since june.???
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KimyH
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When you have had low, even effectively zero, TSH (typically due to being hyperthyroid), it can take a long time for TSH to rise again. More or less, the longer it has been very low, the longer it is likely to take.
It can be many months, even years, or it could never come back to the levels you might expect on the basis of T4 and T3 levels.
I'm not aware that anyone has ever noticed TSH itself - rising or falling. It is the changes in T4 and T3 caused by TSH (or from taking T4 and/or T3, if you were) that would be felt.
A doctor saying that T4. T3 and TSH are "normal" means next to nothing. The reference intervals (ranges) for all three are wide and the difference between being at the top, middle or bottom can be very noticeable.
Please ask for your results to be printed (the receptionist can often do that) and post them. You do need the ranges for them to make sense!
So, first of all, were TRAB the only antibodies that were tested? High TRAB might suggest Graves', but not necessarily, because they can also be high with Hashi's - aka Autoimmune Thyroiditis - which can also cause hyper-like blood test results.
Therefore, it would have been a good idea to test TSI antibodies, to confirm Graves'. Or test TPOab and TgAB to rule Hashi's in or out.
One being that i cut so many food types out of my diet that i'm now scared to add things back in along with dosage changes of prop and carb- never know where I am.
An elimination diet is not much help if you don't add things back in. In fact, it might do more harm than good because you're likely to become deficient in a lot of nutrients if you don't have a balanced, varied diet. It's better to cut out one thing at a time, see if it helps. Then if it doesn't, start eating it again and see if you feel worse. If not, continue eating it. Best place to start with autoimmune is gluten.
But no matter what you eat or don't eat, it's not likely to have much effect on the disease itself, just relieve the symptoms caused by food sensitivities.
If I'm missing something all my symptoms are hyper ones.
Can rising TSH cause the same issues as hyper?
I think what you're missing is that hyper and hypo symptoms can be the same. Which is why we need blood tests to back them up.
TSH doesn't cause symptoms whether it's rising or dropping. It's mainly T3 that causes them when it's too high or too low. And it's not about just being in-range because the ranges are too wide. Common sense should tell us that levels cannot be optimal all the way through the range, that you're going to feel totally different if your result is at the bottom of the range than you would if it were at the top. So, what counts is the result being in the right place for you, to ease your symptoms and make you feel well. But doctors cannot seem to get their heads round that.
can you have insomnia, hot flushing, tremor with tsh on the rise and T3 and T4 in normal range?????
Absolutely, yes - and anger! - if they're not in the right place in the range for you.
So, I think the best thing you can do is go back to your GP and ask him to test the other antibodies to find out if you really have Graves', or if you have Hashi's.
thankyou both. Waiting for them to put my actual ramges on my nhs app. Hopefully tomorrow. Then i ll post what i have. Gonna order tests for missing amtibodies. Cant even get a face to face appointment at the mo with the same doc let alone ask them for a test that they wouldnt want to explain. My main doc was lovely she showed me one lot of results on the screen but she was taking her info from main hospital portal, so not discussing them like she had any idea what they meant. Will post soon
I don't suppose she does have any idea what they mean. Doctors know next to nothing about thyroid and are not trained to interpret blood test results - weird as that may seem.
Graves is an Auto Immune Disease - for which there is no cure - and something has triggered your own immune system to turn and attack your body and Graves tends to only get diagnosed when your immune system starts attacking your thyroid and, or eyes.
With Graves the TSH goes very low suppressed and at this point in time, very much under the control of your immune system and a very unreliable measure of thyroid function, and so you must be dosed and monitored on your Free T3 and Free T4 results and ranges.
Everybody's journey with Graves is unique, with no 2 people having the same ' journey ' and why it's a poorly understood and badly treated AI disease - though stress and anxiety tend to be common ' triggers ' :
With Graves there is likely a genetic predisposition with a family member likely a generation away from you with a thyroid health issue - but why it has reared its head now is the 64 million $ question and you are best placed to maybe know ' the why ' - Graves can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one or seem to simply ' appear ' out of the blue.
You can have blocking or stimulating antibodies at any given time vying for control of your thyroid and the symptoms can be much like that of being on a roller coaster without any of the fun,
some experience extremes of symptoms - nervous, edgy, anxious, fast bowel, eating for England and loosing weight - whilst others feel like they have ' hit the wall ' - run over by a steam roller - and feel flattened with some sort of disconnect to everybody and everything - and you can have a mixture of symptoms - which ever way - it can make life very hard for you to function and be around other people, even family.
The NHS allocate a treatment window of around 15-18 months with an Anti Thyroid drug - either Carbimazole or Propylthiouracil - and all this does is ' buy you time ' - while we wait for your immune system response to calm back down again.
The AT drug semi-blocks your own new daily thyroid hormone production and slowly your over range T3 an T4 readings will fall back down into range with hopefully your symptoms relieved, and the hope is that within this time frame your immune system response calms back down again and your thyroid re-sets itself without the need for any drugs and this phase of ill health - just a ' blip ' - as it is for many people.
As your T3 and T4 fall back down into range - the AT drug is titrated down as otherwise you risk your T3 and T4 falling too far in the ranges with you then experiencing the equally disabling symptoms of hypothyroid.
The Propranolol is a beta locker which also slows down the rate of T4 to T3 conversion and read that this drug needs to be reduced very slowly.
When one's metabolism runs faster than one's normal as in hyperthyroid - or slower when hypothyroid - the body struggles to extract key nutrients through food no matter how well and clean one eats -
and non optimal levels of ferritin, folate, B12 and vitamin D will compromise and compound your ill health further.
So - first we need to see the full thyroid blood test results and ranges at diagnosis to include the TSH + Free T3 + Free T4 and any/all of the antibodies readings and ranges which look like TPO - TgAB - TRab - TSI - or written as the TSH Thyroid Receptor antibody - with ranges or cut off number.
We also need to see where you are now with regards to T3 and T4 and the dose of AT drug being prescribed and please get your core strength vitamins and minerals run - as detailed above, as it reads as though these may well need building back up to help support you through this phase of ill health.
We do now have some research you my find of interest :-
The most rounded of all I researched ( though 10 years after I had RAI thyroid ablation for Graves 2005 ) is that of Elaine Moore - books and website - and there is a section on holistic and alternative treatment options you may find of interest - elaine-moore.com
begining of june started as week knees going up stairs, then more Hyper symptoms- Hot flushing, sweating, weeing alot, skin burning at night, loss of weight, right eye red and puffy. tremors bad night and day, couldn't put shoes on and even in voice. Elevated resting heart with tachy- although previously observed resting heart of 57- but was on thinners after blood clot. so much so at worse burnt 700 calories and hit 3 mins of cardio before lunch and i have a desk job that at the most requires a short walk to canteen. lost 1 stone 3 pounds in 6 weeks and i wasn't massive to begin with just gaining each winter.
14 june 24
T4 25. ( 7.9-14.4) couldn't do TSH not enough blood- they did try 3 seperate times and it was like treacle.
T3 11.4 (3.8-6.0)
Full bloods all normal in range- snipped above
started on 120mg of prop pd- took edge off tremors
28 june 24
TSH <0.02 (0.38-5.33)
TSH receptor abs 8.5 pos >3.3
t4 37.6 ( 8- 18.0 )
T3 10,8 (3.8-6.0 )
Started on 20mg carb- also stripped diet rightly or wrongly, thoughts were low iodine, no gluten, no milk. Found on this forum- suggestions on selenium , iron mag- so added in brasil nut per day, pine nuts, sesame seeds, changed to porridge ( i know- not ness gluten free ) added blueberries, honey rasps and blackberries, cut out refined sugar- added red bush tea. ate alot of lean steak and mushrooms. felt great within 3 weeks. slept great, but then resting heart started dropping- low as 48, in sleep 38. doc dropped prop to 30mg pd.
bloods done 29 july
tried to add gluten back in but tremors seemed to come back along with skin burning
t3 5,2 (3.8-6.0 )
T4 13.8 (8.0-18.0)
TSH <0.02 ( 0.38-5.33)
full bloods o.k. again- will post if needed- not had vit D done
docs dropped carb to 10mg by leaving voicemail. and wrote on notes to endo- sorry bloods done at 4 weeks!!!
starting last week after feeling like social nuciance added some gluten back in, started to get night sweats and trem along with resting heart rising. o.k. in day. then started to get very down, sugar levels seem to rise and struggle to eat and then starving half hour after. started to feel cold in day but when wake in night need cold flanel and fan on.
Got so bad wed didn't go to work and cried so much at husband that he went to docs, - very lovely emergency doc brought bloods forward- had been told last week by shitty man doc over phone that bloods have to be only done 6-8 weeks- so would do them next week at 6 weeks and then ring for a chat a week later when he's back from his 5th hol abroad.
I missed out on my hard saved once every 10 years foreign holiday as i had just been diagnosed with hyper, so my hubby and kids went alone.
Anyway I digress, another doc rang yesterday to say bloods suggest dropping to 5mg carb, but no explanation. I looked at his notes and saw TSH rising so was confused as to why my symptons were tremors, night sweats, massive insomnia- to the point I actually don't think i slept- song playing on loop if i try not to have any thoughts- shittest songs aswell.
finally saw my results this morning and.....
TSH 9.05 ( 0.38-5.3)
T3 4.3 (3.8 -6.0)
t4 8.1 (8.0-18 )
am so hungry- feeling the cold and achy in arms. but still seem to tremor!
What the hell has happened?
Also for those of you that believe, have seen homeopath -i had to turn to one when my daughter was born and had severe reflux, specialist just said suck it up and chucked diff meds at her.
she was lovely and made me feel more listened to and i trusted her instantly, funny though told me probs with beef, mushrooms (i was getting constipated) tomatoes ect, but also said she was better equiped for hypo issues but would help get core back to strength and to have follow up after bloods.
This is such a roller coaster.
Have no idea of where I'm at but think you guys are right about Hashi- if you'd asked me a year ago which camp i fell into- by symptoms alone- lathargic, dry hair, weight gain, always cold- loved the heat- puffy face, heavy periods after years of no periods- progesterone low- not ovulating. then took off combined pill as had unexplained clot.
Lost friend at work week before blood clot.
lost hubbys mum beginning of last year and then dear nan at 101 at christmas- peacefully at home.
Always anxious as a child, sucked it all up when became big grown up girl- held a lot in. was previously very sweaty and skinny as teen.
Gutted that at 47 just as things were looking up have this thing rapidly taking chunks of me.
Sorry so long have to get this off my chest. Don't want to dis docs too much as they have saved life twice, pre- eclampsia with first at 27 weeks, blood clot, pneumonia and pluerisy for unknown reason but was fist misdiagnosed as pulled muscle. That pain was off the chart.
Had some really good ones and some really bad.
They seem really good at saving lifes, but not very good at follow up, after care investigation.
So - this last set of results show that your T3 and T4 levels are now too low in the ranges
and your TSH has risen over the range which is a signal to increase the amount of thyroid hormones circulating in your blood stream and these blood test results are now showing you as hypothyroid.
The AT drug which has been blocking your T3 and T4 now needs to be stopped and we need to see if your thyroid can reset itself without the need for any drugs.
Do you have any further thyroid antibody results from June 14th results - probably reading as a TPO or TgAB readings ?
These usually get run at the first thyroid blood panel - followed by a TSH receptor antibody for Graves a week or two later which we have at 8.50 and over the cut off of 3.3.
I'm surprised your TSH has recovered so quickly from this immune system attack - usually with Graves the TSH - T3 and T4 stay ' stuck ' in the wrong places for several months with the NHS treatment plan for Graves suggesting around 15-18 months on the AT drugs while we wait for the immune system to calm back down again.
I think I'd ask for your Graves Disease - TSH - Thyroid Receptor antibodies to be rerun as your TSH suggests you no longer have Graves Disease - it would also be of use to see if other thyroid antibodies were initially run such as the TPO and TgAB ?
Hi PA, i cant find how to reply to all, so sorry to the rest. i dont have any more june results as they couldnt get enough blood, sample no good. I think something weird is going on here. Bought a blood glucose monitor as thought i was getting low from eating poorly. But shakey legs was when i had high bs. This morning after bad night. Woke to high blood sugar 8.5 , dropped to 2.5 after glass of water. Ate breakfast- porridge, fruit honey, hour later bs 15.5 very high. Pins and needles in my face…. Not a fit person before all this so did worry about diabetes but is one causing the other? Just waiting for the worse really as healthcare team think im nuts everytime i mention a new symptom. Have a nurse booked still for some bloods that never got cancelled last week. Will see if i cant divert to diabetes test.
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I think you are very likely with information overload now - and getting anxious and upset about everything .
Let's try and go one step at a time - your T3 and T4 are now too LOW in the range - and your TSH too HIGH - so the AT drug is now blocking much thyroid hormone - and needs reducing down which is what the doctor has advised.
Ideally we need to aim for a TSH down under 2 - with a T3 and T4 mid way through their ranges.
I strongly advise you to get your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D run - these symptoms could be low B12 - and considering your food issues and the elimination diets you have been experimenting with - low levels of core strength nutrients can compound one's health issues further than necessary.
Thank you PA, I have got a medi checks test kit coming Tomorrow hopefully for vits. I know , i totally agree I have info overload. Been so bad with all this and so frustrated at the system, stupidly thought I could win but educating myself as docs just push a prescription and leave you to fend. I have health anxiety from being left too long with a blood clot and late diagnoses pre eclampsia so my trust was already at an all time low. Once I get my vit results will post again.
If taking any supplements that you are testing you need to stop said supplement around 5 days prior to testing so we measure what your body is holding on to and not that just ingested.
And anything containing biotin needs to be stopped around a week beforehand as this can interfere with the laboratory assay measures.
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