Horrendous Blood Test Results

Hi Everyone, I've just collected my results:-

FT3 12.3 (3.5-6.5)

FT4 31.5 (11-23)

TSH 0.05

Obviously the lab has said I'm over replaced!

I am taking Cimetidine 200mcg 3 times a day, that affects absorbtion of Levothyroxine. (On the patient leaflet)

I have low cortisol @ 15.3 total.

I was thinking about a rT3 test?

I have been taking temps and still below normal. One was 35.3, but mostly in the low 36's.

Still hypo, increasing brain fog and anxiety more recently.

I'm under the care of Dr S who just keeps increasing my doses with absolutely no regard for my low cortisol, and this does concern me.

At the moment I'm on 175mcg Levo and 3 Grains of Armour.

I tried dropping down to 150mcg of Levo 2 weeks ago, and had 2 weeks of desperate fatigue, I barely got off the sofa, really bad nausea, so much so I vomitted every time I cleaned my teeth, dizziness and 24 hour double vision. I'm seeing an endo in August who I am scared is going to cut my doses, which I know I can't cope with.

Things like cracked heels are only just showing signs of improvement after 2 years of meds. Still have enlarged tongue, brain fog, dry skin etc. What I have noticed in recent months is my arm pit hair has now completely gone, and my pubic hair (I lost hair in my 40's ending up with a central bald patch), but now in recent months the sides have gone bald, not sparse, squeeky skin bald.

I'm getting so stressed out, can someone help please?

Thanks. X

41 Replies

oldestnewest
  • my fT3 would look like that if I did not stop my meds before the blood test, so I guess you have not stopped your meds before your blood test right?

    I always leave a good 24 hours from my last thyroid tablet to the blood draw, never a minute less.

    To keep increasing the thyroid meds despite low cortisol is nothing bad at all I don't know why you are concerned about that? the only thing that can happen is that your body does not tolerate the thyroid meds and/or does not utilise them to its full effect, but if you get nasty side effects you would know and surely you would not keep increasing?

    If you are not sure about any of dr S advice all you have to do is tell him and he will not make you do anything you are not happy to do and will try and explain to you his decision making if you ask him.

  • Hi NBD, Thanks for your reply. No I didn't take my morning meds on the day of the blood test.

    I am getting bad symptoms, I've developed a tremour in my legs, and my hands shake so badly it's hard to even sign my name. The nauses has increased dramatically, I'm a gibbering wreck. One night my insomnia was so bad I didn't get to sleep until 6 am. These are all the reasons i lowered down to 150mcg, but I just got worse and worse. I have successfully lowered from 200mcg to 175mcg, but it took many attempts. The hair loss too NBD, that has accelerated in recent months. I know low cortisol has likely to have done this. I am still so cold.

    Regarding the low cortisol, i paid to have this test, i gave it to Dr S , i don't expect to get a "They all look the same to me" response, I felt really let down.

    i think the thyroid meds are just pooling in my blood and going nowhere. The cimetidine i have to take blocks absorption of B12 too, so does Gabapentin which recently I am taking every day for pain, anal fissures, nerve pain, bladder pain. My tinnitus is way up in volume too, and pulsating in my left ear. I've never been so worried tearful and depressed, all my fight has gone. x

  • PS no weight loss and i can still hardly poo!

  • sounds like you may benefit from doing the opposite to what you are doing: no levo but add T3 to your NDT

    you are getting overmedication symptoms, unfortunately it is like that with low cortisol ie: difficult to get it right so one minute you are hyper, you reduce and you are hypo!

    perhaps talk to dr s about coming off the levo and add T3 instead?

    dr s usually does not treat low cortisol he takes the view that this will slowly improve by itself with being well medicated, I agree, however many find more quick relief by addressing it.

    Clarebear has had great success in using the CT3M method, can't remember if you have used it? you can do it with NDT.

  • HI again, When i lowered the Levo, i added a bit of t3 25mcg cut into 4, 4 times a day. I just got more tired, i have no idea what is going on NBD. I've stopped the t3 too for the moment. Every time I cut the Levo I get very weak nauseous and the double vision comes back within hours of a cut. i don't think i'm storing anything. My evening temps go down to the 35's again. i've never felt the burst of energy with each rise, the only thing to have really improved are the fast heartbeats that seemed to shake my body on the lower doses of levo. Now i'm very aware of my heart beats again, and the irregular beats are sometimes there. i have the same diet, and there has been no rapid weight loss, IT's been a good 3 months since i l ost anything. if i was overmedicated I would have had weight loss, been hot, diarrhoea etc etc. i think the low cortisol gives me the shakes. When i'm really stressed, just getting out of the house, i go into drunk, detached clumsy mode, it feels awful.

    I'd much rather be on NDT 100% but I can't get the levo down, it feels like a bad withdrawal, and that's within 2 hours of cutting down. X

  • Would these links cast any light on matters?

    ncbi.nlm.nih.gov/pubmed/730...

    medical-dictionary.thefreed...

    Does Dr S know you are taking cimetidine?

  • Hi nostoneunturned,

    thank you for your reply. What i've learnt about cimetidine in the 10 years i've been taking it, is that it does interact with a lot of drugs. If i get prescribed something i read every word on the patient leaflet. I understand a lot of the problems with cimetidine, i'm not happy about it, but there isn't an alternative. I take it to keep acidity down to prevent bladder pain in interstitial cystitis. I take hydroxyzine too which has been a godsend for my bladder pain. I told Dr S at my first appointment the problem of absorbing levo whilst taking cimetidine. He dismissed it. I told him it's on the patient leaflet. I've told my gp too, nothing ever happens. I've said this a 100 times i don't seem to store levo. With the low cortisol problem i wonder if any of the thyroid meds are reaching my cells.

    I'm hoping the endo i'm seeing in August for the first time can help.

    Thanks for putting the links up, really kind of you.

  • Cimetidine affects the absorption of a lot more than just Levo :-(

    I have seen the effect of this absorption problem in my partner who over 3.5 years became positively malnourished and ended up with heart arrhythmia from taking Omeprazole which has the same effect on stomach acid therefore nutrient absorption. Thankfully it wasn't the same situation like you and it turned out the original problem was LOW stomach acid, NOT high, so was treatable with Hydrochloric Acid capsules and B12/Folic Acid/Magnesium supplements in the short term.

    Vitamin B12 in particular is relevant to how your body handles thyroid replacement.

    As you can't stop the Cimetidine, then might it be wise to supplement those things it does interfere with to make sure you are getting some through?

    I have always followed the concept of addressing adrenals FIRST, then thyroid when it comes to getting things sorted, it is a major concept in US protocols for treating such things in that order, as opposed to here where the adrenal problem apparently doesn't exist! (To be fair, I was less severely hypothyroid though, so for me adrenals were the bigger issue anyway)

    I know Dr S is no different to other UK Doctors in the way he looks at this.

    In fact UK Doctors don't accept any concept of adrenal fatigue (or whatever other name you want to give it!), and as a result my cortisol was just dead low, but "normal" of course according to the Endo. It was so "normal" that I was actually flaking out until I took it into my own hands to self medicate with Hydrocortisone... it seems my body didn't agree, and it thought it DID have adrenal fatigue! ;-)

    As far as improving absorption of thyriod meds, then try doing what I and some others do.. chew the NDT... don't wash it down and let it absorb slowly through your mouth/gums/cheeks (like so many drugs are taken this way now) it is the best way to take Vit B12 (use only Methylcobalamin!) orally too. I am not sure if you can take Levo this way, but I am sure you can search Google and find out!

    Having gone through the Reverse T3 thing myself (I am just subclinically hypo, and thought that RT3 might be my big issue) it was high - it is expensive to test, needs months on T3 only (with lots of ups and downs) it worked for me, but within months it was back again and I was hypo again, as the cause needs to be remedied before it will go away permanently, and with me, I have chronic pain and disability with osteoarthritis, and cant get rid of that :-( I now fully replace using NDT and generally pretty OK on it.

    So for similar reasons, if I were you I would look at the more obvious issues first, before going this route, purely as it's not likely you will get rid of it permanently anyway... absorption and cortisol and other "usual" components such as iron/ferritin/B12 etc. need looking at.

  • Hi Picton, sorry i messed up, my reply to you is below. X

  • Hi, have you been tested properly for Adrenal Insufficiency or just done the Saliva test. With the nausea and other symptoms you have, especially the loss of hair, I would be asking my GP to check for this.

  • Hi Shaz49, i did the adrenal stress profile. I took it to my GP and she has apparently sent it to the endo i'm seeing in August. She did say that he would want to do more tests.

    Thanks for your reply. X

  • Hi,, I think I answered the wrong person with info re non-additive B12, have a look around posts, I answered picton, should have been you.

  • Hi Picton, thank you so much for your really informative reply! I've been taking cimetidine for 20 years now and i know it makes some drugs stronger as cimetidine hangs around in your liver for quite a while longer than other drugs. I know my stomach acid must be very low, and what worries me is my B12 was low before i took any of my drugs. I was prescribed B12 for donkey's years at only 50mcg a day, big deal! I've been taking 1,000mcg day. I tried the one beginining with Meth but they all seem to have "fruit" flavourings that caused me bladder pain. I can't eat anything acidic in my diet either which is quite limiting. If you know of any Meth B12 without flavouring please let me know.

    I tried dropping levo to take T3 to try and reduce the T4 thst isn't being converted and had the fortnight from hell. It's ok if i can stay in bed all the time, but that's not realistic. I've tried a 1/4 tab of T3 this morning after dropping 1 1/2 grains of NDT but i felt my legs go from under me, and now it's hard to keep my eyes open.

    I always chew NDT and sometimes Levo too. I will try and hold it in my mouth longer. It tastes so disgusting though :-(

    Regarding Iron, that is a huge problem for me. With interstitial cystitis you are constantly losing blood through the urine, and my blood loss has been high since January, +++ on the dipstick. Also my b*****y bottom is bleeding daily from fissures.

    I do take Selenium, VitD3 (as it's low) Vit B12, Vit C, Iron and Coq 10.

    While i've been writing this on the phone the double vision is back as i cut some NDT this morning. This is what happens within 2 hours of a cut. :-(

    i see an endo for the first time in August. I really hope he takes my low cortisol seriously. It's out of the normal range at 15.3.

    Thanks again, so helpful. Xx

  • I don't I'm sorry... the B12 I take is a fruit flavour 5000mcg one! That said, they are flavours, not actual fruit! What about the drops.. any flavour is likely just to be synthetic, and the amount is SO tiny.

    Injections.. they are obtainable online, but not everyone is keen to inject themselves, and those can can be painful I understand.

    Is it not possible to alkalise your stomach/body immediately after taking any (small amount) acid containing items, to immediately counteract them (just like putting bicarb onto vinegar!) before they cause any problem? There seems to be a lot of stuff online from people who eat foods etc. to this effect?

    Sympathise with the bladder issues... I have been suffering since February with kidney/Ureter/Bladder pain and Haematuria on and off (sometimes visible more often only on dipstick), and pain from kidney stones or whatever it actually is!... it's been blamed on prostate enlargement (there but slight and no other symptoms), possible stones (nothing shows), cysts (but they are small and very much usual at my age) and although it's thankfully a bit quieter at the moment, it hasn't gone & I still don't even have a real diagnosis! Thank God I have strong opiates for my other pain or I would have gone nuts when it has been at it's worst!

    I have got used to the NDT taste!... I thought it was vile at first.

    My Endo took NOTHING seriously... even if blood tests showed it! So even though (among other things!) I had low cortisol, and was flaking out too with Hypoglycaemia from it. I ended up self treating with Hydrocortisone and was instantly better!

  • Another poster told me of B12 without flavourings:

    A company producing supplements with no artificial additives is Pure Encapsulation,

    pureencapsulations.com

    Their additive free B12 is available from Amazon. Just type their name into Amazon and all their other products will appear.

    Also: on e-bay there is natural factors Vitamin B12 5000mcg x 60 tablets also without additives I understand.

    To raise really low B12 you need to take about 5 x 5000mcg tablets daily sublingually, can monitor privately via:

    myrios.co.uk

    who do a combined serum B12 test combined with folate test for only £30. Divide their pmol/L by 0.738 to convert pmol/L to ng/L if needed.

  • Hi, thanks so much for this. I will keep searching your links. I looked at the pure liquid b12 but it has blackcurrant juice, which is a no no for me:-( I think a liquid one would get into my system better but i have to look out for fruit flavourings, i suspect they will all have this.

    You're so helpful and i really appreciate the info. X

  • Bear in mind that B12, whether in tablet form, or liquid, has a molecule small enough to enable it to be taken sublingually so that absorption is straight into the bloodstream via under-tongue membranes. I would question therefore your assumption that a liquid form would get into your system better, though I can see that the "overflow" into your stomach, etc., of any B12 form having flavouring would probably have adverse consequences. Was there not a tablet form by Pure Encapsulation which was devoid of all flavouring? It could be taken sublingually (not orally, that means swallowing) avoiding all absorption issues there might be in your stomach.

    Going back to have another look!

  • Hi again, yes i did see a tablet devoid of fruit flavourings, so i'll give that that a go under my tongue. Something else i learned today was to take vit c an hour away from b12 as it can affect absorption. I've taking them together. I'll give that a go too. I just thought the liquid would get in easier, lol!

    Bless you for your help. Xx

  • Was worried about that one as think it mentioned citric acid-OK? How about patches? Must be flavouring free, whoever heard of plain skin having a sense of taste?!

    amazon.co.uk/Viepatch-Vitam...

  • Obviously i'm concerned about the citric acid, it's just how much is in there. I had to change my vit C tablet to an acid free one. I'll just have to give it a go and maybe drink a glass of milk to try a neutralise the acid a little. It's all a pain in the a**e !! Have you found patches? How i wish my other meds were by patches! Xx

  • Hi! I've ordered B12 patches. I would have had no idea without your help. Thank you! X

  • Hi Picton, thanks again, with interstitial cystitis even sythnthetic flavourings can do harm. The bladder wall is cracked bleeding and hypersensitive. It i make a wrong move the pain can be like childbirth i kid you not, and it can go on for 5 days or more and you are housebound weeing all the time, every 10 mins i have experienced day and night, no thank you. I definitely don't want to get into that again. I even have to have acid free Vit C. I tried the other and the burning in my bladder was just awful, then of course it takes many days to recover. I had a kidney stone 4 years ago, that pain is as bad as childbirth, even morphine didn't shift it :-(

    I don't know if you have done a pain mamagement course? The best thing i learned was if you take paracetamol with your pain meds they deliver faster and stronger. Good tip for chronic pain.

    Oh dear re the endo, i'm not expecting much to be honest when i go, i'm so very complicated with multiple health issues any consultant i've seen can't seem to cope. I've been fainting on doing too much physically. The first time was getting the snow off my car, also i'm finding during and after a shower makes me feel very faint. I get hypoglycaemia too. Often i've had to get up in the night to eat something. Now i eat a snack at bedtime.

    Very interested in your treatment of low cortisol. What dose of steroid did you use? Are you finding it difficult to sleep? I already have terrible insomnia, so that worries me,.also any weight gain? I had steroid injections into various joints over a 8 year period, that with chronic pain and various traumas since childhood i think has caused my adrenal problems. I'm used to self medicating, so that would be easy, lol!

    Thanks again for your interest. Hugs.

  • Sometimes it helps dropping down on the Armour, that would reduce you thyroxine and T3 levels a little, but obviously you could drop the thyroxine down as well. Sometimes once the body has had a real boost, then it can be dropped back. I know a few people who have been like that. Don't know if that will help you. Hope you feel better soon.

  • Hi Muffy, i dropped the levo by 25mcg 2 weeks ago and had increased nausea double vision weakness etc etc. I was on 200mcg and it took many attempts to get that to 175mcg. Dr S keeps increasing my dose due to low temps etc. I have to admit i'm gobsmacked by these results, all i can think of is the thyroud meds are pooling in my blood. Maybe if i get treatment for low cortisol i may convert, absorb better.

    Thanks for your reply.

  • PS In a paper for Debate, 'Are biochemical tests of thyroid function of any value in monitoring patients receiving thyroxine replacement?', by W D Fraser, E M Biggart et al, British Medical Journal Volume 293 27 September 1986, they suggest once on thyroxine treatment, the ranges should be different.

    FT4 12 - 36

    FT3 3 - 8.6

    TSH <0.1 - 13.7

    Going on these figures, the only one out of range is your FT3 result.

    By the way, what time of day did you have your blood taken and more importantly, did you take your meds on the day of the blood test?

    The earlier the better for the blood test results and when taking T3, never take your meds the day of your blood test.

  • Hi Muffy, to be honest i'm not a great believer in the accuracy of these tests, but my concern is the fallout with the doctors :-( very interesting figures Muffy, and that was way back. I don't feel hyper in the slightest, i've been taking my temps and i'm still in the 35's/36's.

    I always get an 8.30 appt and never take any meds beforehand. Maybe i could fib i did lol!

  • Have you considered whether you might also have adrenal problems? Just wondering because of your persistently low temperature. I know Dr P believes that thyroid meds can't work effectively if you also have adrenal (and I'd add pituitary) problems. I am on a high level of adrenal support currently, and my temp has increased and just recently (with the addition of a little cortisone cream each morning) my blood pressure is dropping. I have also just reduced my thyroxine, although I also take Nutri thyroid.

    There's a good adrenal questionnaire here adrenalfatigue.org/take-the... which gave me the first clues that my main problem was possibly adrenal.

  • MY GOODNESS.. thanks for this.. mine was off the scale on this questionnaire.. but actually I am now feeling fantastic because I followed Dr P's Adrenal suppport regime out of his book (without a diagnosis)... and have proved that it can... get better!

  • Hi Rosetrees, thanks for your reply.

    Yes i have adrenal problems. I did the adrenal stress profile test and my total was 15.3 ranges 22-44. My gp sent the lab report to the endo i'm seeing for the first time in August. My cortisol is on the floor until 4pm, just wondering about taking thyroid meds at night, but then i have other medication consider. X

  • Ps, what adrenal support are you using? X

  • Sorry Helcaster, I only just saw this. I take 4 x Nutri Adrenal Extra, 3g Vit C, 50mg CoEnzymeQ - along with 1000iu Vit D, Vit B12 spray, 2 x nutri thyroid and (for the last few days) 25mg thyroxine. I have also just started using 0.5ml hydrocortisone cream (approx 5mg HC) each day.

    It took me 2 months to reach 4 NAX per days and filled in with the regular nutri-adrenal which is easier to tolerate.

    My main problem is adrenals, although I don't know if there is pituitary involvement too. Interestingly, the NAX contain pituitary extract.

  • Hi rosetrees, that's so helpful thank you. Has the B12 spray got your number's up? I've ordered some patches to avoid any flavourings, i'm really hoping they'll give me a boost. I did try nutri adrenal in the early days but they tended to make my diarrhoea worse. Also they seem quite yeasty and i used to have a lot of thrush.

    Are you feeling any better on this regime? X

  • Hi Helcaster. I don't know what difference the B12 is making as the GP didn't include it in my test a few weeks ago and I forgot to ask. My plan is to ask for a full test around September time, to see where I'm at.

    I cannot even begin to tell you how much better I am feeling. I can hardly believe it myself. When I started all this I was bed bound, every inch of me shaking with quite literally just enough energy to get downstairs 3 times a day to stuff something in the microwave. I was so depressed that for the first and only time I seriously considered whether it worth going on.

    I'd lost my voice and couldn't even breathe properly. Those were the first two things to change when I went on thyroxine, reluctantly prescribed by a stand in GP who I simply lost it with. The adrenal connection I found out for myself, ordered the Genova test and made an appointment to see Dr P.

    I'm a different person now - and everyone tells me I'm looking better than I have for years.

    I still have a long way to go, partly because I've become very unfit and weak. I'm not pushing things right now, as part of my problem is that I'm terrified of making myself ill again. So I'm doing things one step at a time and gradually doing more and more.

    I'm beginning to get quite excited for the future and for how much better I could eventually get.

  • Did any doctor help with your recovery?

    I'm fast believing the only way to get some quality of life with this is to take control and experiment to find what works. Throwing lots of money around too;-)

    I'm absolutely thrilled for you, you've obviously had to work hard for this. Xx

  • Your Meds are not working but they are surpressing your TSH this means that you are not absorbing properly so....

    reasons you can't absorb? a) vitamin D or Iron/ferritin deficiency

    b) reverse T3 issues c) adrenal issues d) intolerance to one or all of your meds e) something else

    I think you need to start with the adrenal stuff.. try this..

    DHEAVitaminsThyroxine

    DAY 1xYesx If you are on any product with T4 in it then you

    DAY 2xYesx

    DAY 325mgYesxrun it down first

    DAY 425mgYes½

    DAY 525mgYes½ If you are only on T3 products start at Day 4

    DAY 625mgYesYes

    DAY 725mgYesYesBuild up your thyroxine very gently and take your

    DAY 825mgYesYes

    DAY 925mgYesYestemperature every day.. if it's high cut your

    DAY 1025mgYesYes

    DAY 1125mgYesYesthyroxine a little

    DAY 1225mgYesYes

    DAY 1325mgYesYesstop DHEA after 6 weeks that should tell you

    DAY 1425mgYesYesif it's an adrenal issue, if you don't feel better

    DAY 1525mgYesYesthen it wasn't...

    so time to try naturethroid/something less chemical?

    DAY 45STOPYesYes

    Good luck with this

    AND anyone just about to kick off about DHEA being dangerous or a controlled drug.. you can buy it in Holland and Barrett and it's NOT dangerous, and if you feel terrible, just stop taking it...

  • I doubt that you can buy DHEA in Holland and Barrett, really.........as it is a class C drug in the UK.

    dhsspsni.gov.uk/pas-class-c...

    I take 10mg daily on my private doctor's instructions and no I cannot buy it freely from any shop in the UK, only on prescription.

  • Defintely low vit d, b12 and iron, although i'm supplementing. Cimetidine defintely a big culprit. RT3 yes i think that's why my T3 test results are so high. Low cortisol, i know i have this. I will have to experiment with DHEA and hc if i don't get help from the new endo.

    Thank you so much. X

  • other things to consider are... a low GI diet and cutting out dairy... if your whole system is in hyper-sensitive mode, you may need to calm it down before your meds can work properly.. I think this happened to me and now.. after lots of trial and error.. I am really really well

    Good luck again..

  • I tend to have a lowish low GI diet, but i know i eat too many carbs even if they are wholegrain! Dairy i would find hard, especially as it's a source of B12. I do have milk but very little cheese, butter or yoghurt.

    My diet overall is quite bland as i have to eat low acid.

    I did have Green and Blacks choc very occasionally, but even that leaves me really wired.

    Thanks for your help and i'm so pleased you're feeling so good now! X

  • Have you had your B12 checked?

  • Hi, 10 years it was low and i had 50mcg prescribed up until 2 years ago.

    2 years ago when diagnosed i had another test and it was in the low 500's. I've been taking 1,000mcg. I'm going to get another test.

You may also like...