You will never guess what just happened guys. Just had a call back from a doc at my surgery on triage as i put a call in about kidneys aching. Anyway he was obviously looking at my records whilst talking and picked up my now diagnosed autoimmune problem and .......wait for it.......he is sending me dowm hospital with urine sample and ......this is the best bit..... He said lets get ALL your bloods checked again. He's doing the flippen lot peeps. B12, ferritin, folate blah blah.....and an even bigger wait for it......my antibodies!!!!!! (Picks oneself up from the floor). He suggested it without me even prompting him!!!!!!
Cant believe i have spoken with a doc who knows what bloods i need done. Had to giggle after conversation tho cus he wanted me to get down hozzy for tests today and i said i couldnt cus had my levo and would give skewed results. He didnt know that..... Surprise surprise.... think I gave him something to research lol. He also said what i have sounds morelike graves!!!!!!! Huh???? BUT he wouldnt have had time enuff going thru my records to come to that conclusion.
He is a senior partner of the surgery and rarely see him myself but i have taken mum to see him. As he seemed to know the bloods that we sufferers need to have has thrown me for six so i think i am gonna give him a chance in helping me. I mean, cmon, peeps how often do we find a doc that will say "lets check the whole lot including antibodies"!!!!!! That has to be a good sign surely that he might know something? I said basic tsh thyroid bloods i normally have done are useless for sufferers cus they dont say what is really going on. When i asked what he is testing for, he rolled off everything on OUR list!! Probs is not seeing untl 5th jan for results although that isnt far away is it! Kinda feeling hopeful at the moment. Fingers crossed that i might have found a gp with a little knowledge
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Jefner
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Hi, I am so very tempted to go now and get my bloods done even though I have taken my Levo for today, just so I can get some sort of results back before I see him next week. Unfortunately until I found this group I used to do that anyway until I was informed otherwise. Feeling so poorly today and the temptation is there. Will it really skew my results if I go today? Just feeling very desperate
Yes, it will skew your results Jefner and wont give the true picture. Early a.m. blood test will also show your TSH at its highest level as it reduces during the day.
Hang in there at make an appointment today to get the earliest possible one. Fast also and take levo after test.
I'll cross fingers that everything will run smoothly for you.
I will do my best hun, have appt to see him anyway early nxt wk which i booked other day online. Just have to get through this week somehow and keep myself occupied mentally cus physically i can do nothing at the moment. Do weak and drained but i can now hang onto hope that i can get my life back with help. Posted earlier hun detailing all the tests is checking. Have a look and see what u think
I've read your blood tests you posted earlier and agree with the response Clutter gave you.
Let's hope you can get sorted out with your hormones and the New Year will be more promising and you'll be on your way. Unfortunately it isn't an overnight recovery so wishing you well.
Thanks hun, i had been bobbing along as well as i cud b for last 10yrs until this summer when thyroid went slightly over with nasty symptoms and private bloods confirmed autoimmune. Just not been able to get back where i was
Unfortunately there's no quick fix as the hormones have to be increased gradually. It's taken 10 years for your hormones to drop gradually to the point you need replacements so it is just as gradual to work back up again. Hopefully it will be soon.
Looking back i am sure i have been hypo longer than the 10yrs when i was diagnosed. I remember times at least 2-3yrs before diagnosis when i had symptoms of awful fatigue and stuff
I am not holding my breath honey, as I said in my post he said having my bloods done after my Levo won't make any difference in my readings until I told him it may well do, even though for the last 10yrs I had been mistakenly doing that anyway. Cus I feel so poorly I am very tempted to go and get bloods done anyway just to see what shows up but I could be shooting myself in the foot by doing that now I have had my daily dose
I am not holding my breath honey, as I said in my post he said having my bloods done after my Levo won't make any difference in my readings until I told him it may well do, even though for the last 10yrs I had been mistakenly doing that anyway. Cus I feel so poorly I am very tempted to go and get bloods done anyway just to see what shows up but I could be shooting myself in the foot by doing that now I have had my daily dose, but deffo gonna take my wee wee sample in today so may at least if any infection shows up I might get the results back before they close for New Year.
Why is it we always get poorly when Bank Holidays or weekends are involved??????
my friend has just picked up my blood sheet and the following has been crossed to be checked which I have googled to see what they translate to in English lol
Haematology
- TPO (thyroid peroxidase antibodies)
- FBC (full blood count)
- ESR (erythrocyte sedimentation rate) - which detects inflammation in the body
Biochemistry
- U&E (kidney function)
- LFT (liver function)
- Gamma GT (liver related)
- Bone Profile
- HbA2C (blood sugar levels)
- Thyroid Function Test
B12/Folate
Cholesterol
Ferritin
Immunology
- CRP (C-reactive protein (CRP) is a blood test marker for inflammation in the body. CRP is produced in the liver)
I also noticed that my tests are non fasting BUT really they will be fasting because at that time of the morning I never eat anyway until I have been up for at least 2hrs so I am wondering whether I should let the blood takers know this. Arn't fasting tests better on the whole anyway?
my wee wee test is just to check for bacterial cultures
Something else I just spotted on the sheet against clinical details is Hashimoto's Disease!!!!!! Thanks to MY private blood tests it's now official although when we spoke on the phone this morning he mentioned Graves. I am not going to even touch on reading about Graves at the moment, because I will just get myself into even more of a state
He suspects Graves, but he's not testing for it. He's just doing one of the tests for Hashi's. But, you already know you have Hashi's, so what's the point of doing that? As you surely know, antibody levels vary. So, if it comes back low this time, dont let him tell you you Don't have it. Because once you've got it, it doesn't go away!
Anyway, that's just great! I'm so happy for you. This could be the start of something good! Can't wait to see the results! Squeeeeeeeeee! lol
why would he suspect Graves hon? Oh hang on I see why now because he looked at my private tests which showed that I had gone hyper. I questioned that when we spoke very briefly on the phone this morning, as I said to him that the high antibodies from my private Blue Horizon blood test showed I was Hashi's!!!!
Yes, they often Don't know that Hashi's can make you swing from hypo to hyper and back again. They just Don't learn these things in med school.
Just looked at your last blood tests, again. But you weren't hyper. Your TSH was suppressed, and your FT4 was just slightly over-range. But your FT3 was low. If you had been hyper, the FT3 would have been well over-range.
I think I explained it to you last time. The problem was that you weren't converting properly - probably still aren't. So, the FT4 needed to be that high to give you a reasonable amount of T3. The TSH is irrelevant.
This doctor may be willing to do all the tests, but be careful, he doesn't know how to interpret them!
I was hyper initially hon when I first had bloods done in October. Oh I certainly will be coming here first with my results before I see him lol. I did the finger prick test with Blue Horizon about half an hour after I had my bloods done at the hospital. They came back slightly different lol as below
Hospital 9th October readings when I was on 150mcg Levo
FT4 28.6 (9.0 - 26.0)
TSH 0.08 (0.27 - 4.20)
Hospital 2nd December readings from 125mcg dosage
FT4 20.5 (9.0 - 26.0)
TSH 0.04 (9.0 - 26.0)
Blue Horizon 2nd December readings from 125mcg dosage done half hr after hospital bloods
FT4 22.06 (12-22)
TSH 0.03 (0.27 - 4.20)
FT3 4.50 (3.1 - 6.8)
I also have printouts of all my various bloods done in October
Yes, possibly, you were hyper because you'd had a hyper swing of the Hashi's. Not because you were hyper per se. You have to take those antibodies into account. They change everything.
But, having an over-range FT4 and a suppressed TSH does not make you hyper. It's a high FT3 that makes you hyper. But I haven't seen any sign of an over-range FT3. Have you?
When did you have those first bloods Done? Is it one of those results? Because none of them are hyper.
Results are dated hon, had symptoms since late summer and first bloods done on 9th October. Then my Levo was adjusted and second bloods done on the 2nd December.
I didn't know until the Blue Horizon test on the 2nd December that I had Hashi's. That was the main reason for me going private as my Doc wouldn't test antibodies and T3 so I knew, through you guys here, that I had to do it, so I have only known a short time now which is why I am asking so many questions because I have to learn all about it as you did. I want to learn from my fellow sufferers I only have my fellow warriors in this group for support; am totally alone with it otherwise, no support from my friend or family because I have tried to explain but they can never understand the debilitating symptoms nor do they seem bothered in researching it themselves to support me. I have a bit of a soft spot for you and Clutter because you have both helped me try to understand, despite my asking the same questions due to brain fog lol. You have been very supportive and patient with me and I want to learn from a lady (yourself) that has spent many years researching and trialing things to manage her own Hashi's You can't beat experience lol
So it's mainly T3 and T4 levels that are the most important in the way of readings?
Especially T3. But you weren't hyper according to those results, because you didn't have your FT3 tested, So it was impossible to say. You are only hyper if your FT3 is somewhat over-range.
I didn't know that you had your very first test on 9th October. That's why I asked. Could have been the second or third for all I knew.
so if my T3 was out of range (high) I would have a lot of hyper symptoms, and if T3 is under lower range, I would feel much worse with more hypo symptoms. But with Hashi's I can get both anyway? lol
How come it has been suggested that I could add some T3 if my levels are within range?
Because your T3 is too low in the range, and you aren't converting the T4 you're taking.
It isn't just about being 'in-range'. It's about where in the range your result falls.
Most people need their T3 to be up the top of the range to feel well. Yours is nearer the bottom. That's too low. And taking more T4 won't help because you can't convert it.
With Hashi's, you can swing from hypo to hyper and back again.
That is because your gland is slowly being destroyed, and little bits of it are breaking off into the blood Stream.
As they break off, they dump all their hormone into the blood, so you become 'hyper'. But, it's only temporary.
Once all that hormone is used up, you go back to being hypo. But more hypo than you were before because you have less gland to make hormone.
It's a progressive disease.
As for symptoms, a lot of them cross over and can be hypo or hyper.
And, you can have both at once. There's a reason for that, but I Don't want to over-load you with information at the moment.
So, just going by symptoms can be a little confusing until you get to know more about your body and your disease.
But, the up-shot is, that you cannot be considered hyper unless your FT3 is quite a bit over-range.
that's really helpful and easy to understand hon thanks, the more info the merrier for me please as I obviously now have to learn how to calm down my immune system, namely reducing my antibodies and work out what would trigger a flare up. Do you get flares and are you able to pinpoint what triggers them, along with how long flares can last?
I was going to ask where in the range my T3 should be to feel better. As he hasn't marked T3 on my blood sheet to be tested again, should I get a private one done and then I will have the full picture to discuss with him?
Your T3 should be wherever in the range that makes you feel better - even if it's slightly over-range. We're all different and we all need different levels to feel well. Doctors just Don't understand that.
What triggers a 'flare-up' (a hyper swing) is gland activity, which is why I always say that your TSH should be suppressed. Yours is, so keep it that way.
How long they last is anybodies guess. Could be years, could be an afternoon. Dépends on so many things.
But, I think you've been told before what to do to try and calm the immune system and reduce the antibodies : gluten-free and/or dairy-free and/or sugar-free diets. Whichever work for you. And, you could try taking selenium because that sometimes works.
I Don't get 'flare-ups' anymore because my gland has been killed off - or as near as damn it. And when I did get them, I hadn't even been diagnosed so had no idea what was going on. I didn't even know what a thyroid was, then!
I'm not going to tell you why you can have hypo and hyper symptoms at the same time, now. Because it's too complicated, and knowing it wouldn't help you to avoid it. Wait until you've thoroughly Under-stood the basics. Don't try to run before you can walk! You'll only get more confused.
thank you my darling. Guess what I did this morning. Went straight for my bloods around 9am. Because Doc didn't mark T4 & T3 tests and it was just the standard one, which we know is of no use to anyone, I broke down at the hospital this morning and told the ladies there that I needed those tests added because my Doc had missed them after I requested them (one bit fat fib, ssshhhhhh, don't tell anyone lol). One of the blood taking ladies there informed me that as I was having an antibody check, if the readings came out elevated, they would auto do a T3 & T4 check anyway!!!!!! Don't know whether that's true because it's the first time my Doc has added one of those to my tests anyway, but that is interesting info for other sufferers here that have to go through the NHS for bloods.
Initially they told me to to ring the doc, request a new form with those checks and come back for my test, but I said that I would then have to come back tomorrow because of the time and my results would then be delayed another day (especially with the New Year Bank Holiday). As they could see I was in a terrible tearful state and close to begging, they made a note on the form for me "patient requests T3 & T4 checks" and the blood taker took a separate vial of blood for that test. So fingers crossed I get those tests done!!
Well, a girl's gotta do what a girl's gotta do! I frequently resort to tears. If I don't use 'threatening behaviour'! The trick is deciding which one is going to work best. lol
Anyway, let's keep our fingers crossed that the antibodies are high and the do the Frees!
how true honey, shedding the tears can work when you need them too lol. I am a bit like you then, when I get really frustrated with the system I could easily start with the threatening stuff; I can be a gobby mare!
Please don't think I am just naturally thick, stupid and hounding you for info; some days I just can't absorb what I am reading and when I do, it seems to be stored somewhere in my brain whereby I can't call it back when I need to, so I now resort to making notes. You are also one of the most experienced ladies on here and I truly value your advice and support - as they say "you can't beat experience"!!!
..................
"I Don't get 'flare-ups' anymore because my gland has been killed off - or as near as damn it. And when I did get them, I hadn't even been diagnosed so had no idea what was going on. I didn't even know what a thyroid was, then"
.................
I am where you were as regards being first diagnosed. Because it was only recently confirmed that I have Hashi's, it's a totally new ballgame for me now. May I ask what sort of bloods would show that the gland had been pretty much destroyed. I am assuming elevated antibodies just confirm Hashi's and flares?
No, it's a scan that shows that. There's was practically nothing left of mine when they scanned it (can't remember the right word for that, but 'scan' will do, like a pregnant woman, looking at the baby.)
Once the thyroid gets to that point, the antibodies are diminishing. Once the thyroid is dead, they Don't bother you anymore. I would probably test negative, now.
It's pretty certain that I've had this since I was a child. Various symptoms have come and gone through the years - a few Hashi's swings - lots of changes in weight.
At the time I was diagnosed, the only strong symptom I had was rapid weight-gain - you could almost see me expanding! And my doctor was freaking out because he hates fat women! He maintained it was all due to me eating butter! lol So, sent me to what he thought was a dietician. The 'dietician' turned out to be an endo, who questioned me and decided to test my thyroid. The scan was part of the routine tests.
wow, sounds like you were very lucky that your dietician turned out to be an endo or you would have still been suffering. I cast my mind back and I know I have had problems longer than my diagnosed 10yrs! Just had some gluten free toast for my brekkies (I know it's lunchtime lol). Need to get my vit 6, B12 and B complex down me. Are they all OK to take together? For the last week my tummy has been icky and my poops a little different but from past experience when I have had really severe anxiety, nausea and icky tum and poops are always affected, so I am just hoping it's that unless my urine test shows up an infection. Something that did settle my palps and tum last night was a cup of camomile tea!
yes I have the B12 methylcobalamin because I had read (from here) about avoiding cyanocobalamin, must admit I didn't look properly at the ingredients on the Bcomplex before I purchased them and didn't know about the folic acid either. What B complex do you take? I obviously need to have a mooch on Amazon. I see on this site that there are links to recommended outlets to purchase supplements and stuff. Am I right in assuming that I they are will be the right stuff without having to check all the ingredients?
just compared and there is quite a big difference in the levels in each brand. Wondering if the one you are taking might be too high for me, although we girlies do need more of our B vits than men
going back to your dead thyroid - I read that once antibodies kill your thyroid they are still active and can start on other organs of your body which is why it is important to lower the antibodies via diet/lifestyle. Do you have to take a hormone replacement?
Umm... yes. Without a thyroid, if I didn't take hormone replacement, I'd be dead! lol
I Don't know about Hashi's antibodies. That might be true of Graves antibodies, but I think the Hashi's ones just go back to sleep. I Don't have any problems anywhere else.
No. Definately not. Imagine you had it removed, and the next day, they found a cure for Hashi's!
I Don't think it is a butterfly anymore. More like a shrivelled-up walnut. Bits of it fall off, so the shape changes, and what's left Withers. Don't suppose there's much left of it at all.
Yes, I still get lots of thyroid-related problems - hair-loss, inflammation, fatigue, flakey nails, painful muscles.
In all those years undiagnosed a lot of permenant damage can be done.
Nutritional levels got very low before I even knew they were important. I think I must have had low B12 all my life - at least since I was 27, because that's when the neuropathy started. It doesn't go away. I've lost my teeth, and I can't get them back!
And doctors' continued mis-treatment hasn't helped, either. The body can only take just so much. But, I'm still alive, and that's what counts!
I know there are people worse off than us but do you ever wonder what we did wrong in our previous lives (if true) to deserve so many years of pain and anguish. Most of my 53 years has been pretty bad tbh
No. Never. Come to that you might just as well say : why aren't I rich? Why aren't I beautiful? Why Don't I live in Miami?
Things are the way they are, and that's all there is too it. We can try to make things better, but there's absolutely no point in in asking what we might have done to 'deserve it'. What did Marilyn Munro do to deserve being beautiful? Nothing. That's just the way it is.
Hi Diyena, I haven't had time to scout around the site to see who lives nearby. Feel free to message me hon xx Would be nice to have a local thyroid buddy, it's a lonely life for me with no-one around me that understands enough to talk about it
oh my, I didn't expect that!!! Rang to call a doc out for a home visit this morning because I feel so poorly and when he rang me back my bloods came back this morning (only had them done 24hrs ago)
As there is a shed load of them I just took the basics from him, so here goes, starting with previous tests first:-
Hospital 9th October readings when I was on 150mcg Levo
FT4 28.6 (9.0 - 26.0)
TSH 0.08 (0.27 - 4.20)
Hospital 2nd December readings from 125mcg dosage
FT4 20.5 (9.0 - 26.0)
TSH 0.04 (9.0 - 26.0)
Blue Horizon 2nd December readings from 125mcg dosage done half hr after hospital bloods
Cholesterol has come down too apparently which can't be a bad thing
Thyroidperoxidase abs levels from my Blue Horizon test on 2 December came out at
H 394.4 <34 kiu/l
Hospital test from 30 December came out at 366 kiu/l
Levels are lower but unfortunately I haven't a clue what they actually mean!!!!
One thing that stands out to me is my B12 levels at 803 which look to be good levels. I have copies of all my bloods done at the hospital (live/kidneys, the whole shebang) but can't find/or read the one relating to B12 to compare. I must have had one done because when speaking to him he told me my previous level which was around 445. Unfortunately he was speaking handsfree on his phone whilst tapping away on his computer so some words were missed. Will get those exact results on Tuesday. From my Blue Horizon test on 2nd December the reading came out at 334
From advice on here I started to supplement with 1000mcg Methylcobalamin with a B complex for a couple of weeks which has obviously topped up my levels. Unfortunately I think I need to stop it and probs take one a week or go on a much lower dose as I think that some of this severe anxiety and nausea I have been experiencing is a side effect from it (from what I have been reading) and when I took my dose yesterday my anxiety symptoms were awful hence phoning the doc this morning for help.
These are just the essential ones I made a note of so I can post on here. Will get the rest on Tuesday from my appointment
Does anything stand out like a sore thumb to anyone?
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