NHS just admitted it is unable to sort as is too complicated

My daughter saw her Endo/Doc yesterday who was perturbed by the latest results. She had been on 10mcg of T3 only for 2 weeks and then on 20mcg of T3 for 2 weeks but had awful headaches, fatigue & swollen, so cut back to 10mcg. Her results yesterday were: TSH .98 (.27-4.20), T4 7.6 (12.0-22.0), T3 4.6 (4.0-6.8).She has also put on weight. Her T4 had dropped from 15.7 6 weeks earlier when she was on 25g of Levo. The Endo, who is very sympathetic & helpful, is referring my daughter to a functional doc as she says the NHS will never sort this as it all stems from a craniotomy for a colloid cyst in the brain 2 1/2 years ago. They have recently suspected secondary hypothyroidism but are not sure now if it is to do with her digestion (suffers awful constipation & has mottled rash on abdomen), her brain or her endocrinology. Her white blood count & lymphocytes are also low. She has been on a very limited diet for over a year - no gluten, meat, carbohydrates, dairy, sugar etc. but put on 12 kilos 2 years ago. Her recent blood test was taken at 10am & the previous one at 1pm, don't know if that makes a difference!

Sorry it is such a long post but would be grateful if anyone has any ideas?

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  • Your poor daughter I bet it's frustrating for you both!

    Has your daughter been tested for other autoimmune diseases? Particularly antibodies?

    The reason I ask is low white blood count, constipation and skin rashes are symptoms of connective tissue disease which I've just been diagnosed with. Just a thought but maybe a referral to a rheumatologist maybe if help.

    I really hope she gets the help she needs quickly x

  • Thanks for your reply. She has been tested for autoimmune of the thyroid which she isn't but she has tested positive for autoimmune. Do you put on weight with connective tissue disease because feeling swollen is her biggest nightmare? x

  • Yes you can put on weight with CTD. I've found a lot of the symptoms overlap. Has she been tested for ANA antibodies. I know there are a number of antibodies they tested me for and these are strong indicators for other autoimmune diseases but rheumatology are the experts in this area so if you haven't been referred I'd definately request one! X

  • Yes, I think she was tested for Serum anti nuclear antibody level which was positive. It was suggested she see a rheumatologist so hopefully the functional doc will follow this up. Her weight gain is partly edema I think, as it goes up and down. Is this part of connective tissue disease? x

  • I'm newly diagnosed so only have very limited knowledge but it can cause weight loss and weight gain. I was positive and with my symptoms I've got a diagnosis so fingers crossed your daughter does too. It's taken me 8 months to get it confirmed and treatment so keep pushing! X

  • Thanks. What is your treatment? x

  • I've been put on hydroxychloroquine I understand this is quite an effective drug but takes 3-6 months to work x

  • Thanks. We'll look into it. x

  • I am really sorry for your daugher and you as when things are so complicated that doctors don't really have an idea, so it is good that she's being referred to a Functional Doctor who, hopefully, can put her on a path to better health.

    I should mention that too low a dose of hormones can backfire somewhat and 20mcg T3 is only around 60mcg of levothyroxine. Also some can have a sensitivity to fillers/binders in tablets and taking an anti-histamine tablet one hour before T3 and if there's no reaction they have to change to another make.

    Constipation etc can be caused due to hypo as it slows everything down in our body and we can have low stomach acid which doesn't dissolve food/protein effectively.

    draxe.com/low-stomach-acid/

    Blood tests have to be at the very earliest possible, fasting (you can drink water) and allow 24 hour gap between last dose of thyroid hormones and test and take afterwards.

    (I have no medical qualifications)

  • Thanks Shaws. She felt so ill on 20mcg of T3 that I don't think she could tolerate more. Her Endo/doc is so perturbed that she has told her to come off everything until she sees the functional doctor, who apparently is meant to be very good. I was sure the constipation was due to hypo but it only got worse with the T3. She's very careful to fast before the blood tests and not take T4 or T3 for 24 hours before.

    Crossing fingers that the Functional Doctor cracks it!

  • Ah! There, now, we have a clue. 24 hours is too long to leave when you're taking T3. You should only leave 12 hours. 24 hours is for T4.

  • Yes, it was only about 12 hours with the T3 but longer when she was on T4.

  • OK :)

  • I leave 24 hours between my T3 and T4 and a fasting blood test? How will this affect my results? Should I spread my T3 over 2 doses during the day? Thanks

  • If you leave 24 hours between your last dose of T3 and the blood draw, you will have a false low FT3. It should be 12 hours.

    Whether or not you split your dose of T3 is entirely up to you. There is no 'should', it's whatever makes you feel well. :)

  • Do you have her results from when she was diagnosed? That would give more of a clue as to why she's having such problems.

    Has she had her antibodies tested?

    Why is she on such a restricted diet? Her weight gain probably has little to do with her diet, it's more likely to be due to her low T3.

    Her low TSH is in part due to the time at which she had her blood drawn. TSH is highest first thing in the morning, and before eating. So, it would obviously be lower at 1 am. Unfortunately, doctors can't seem to get their heads round this.

    Did she leave a 12 hour gap between her last dose of levo and the blood draw? More would give her a false low.

    It's possible that she increased too quickly. Increases might be easier for her if she does them by quarter grain every two weeks, rather than half a grain.

    Don't worry about the FT4. That is bound to be low when taking T3. The most important number to look at is the FT3.

    If her endo wants to know if her problems stem from damage to her pituitary, there other tests he can do, because other hormones will also be low. I don't think constipation causes hypothyroidism, it's more likely to be the other was around. But, she might have a leaky gut. Have they tested for that? It's really no good saying 'oh, this is too complicated' if they haven't even done all the tests!

    Has she had her vit D, vit B12, folate and ferritin tested? Because if her nutrients are not optimal, her body will have difficulty dealing with the hormone she is giving it. :)

  • Thanks greygoose. Her vit d etc all seem to be fine. The thing is with her blood tests that when she has them done early in the morning they are lower than later on in the day which I thought was the wrong way round? She's been on a restricted diet because her digestion is so painful after eating anything too solid.

  • 'Fine' is meaningless, like 'nice' and 'ok'. Do you have the actual numbers? 'Fine' usually is doctor-speak for 'in-range', but 'in-range' is not the same as 'optimal', and it's 'optimal' we need.

    Which blood tests are lower in the morning? That can't be true for the TSH - unless her TSH varies a lot.

    I see above you say 'She has been tested for autoimmune of the thyroid which she isn't'. What exactly was tested? TPO antibodies only? Or TPO and Tg antibodies? If either of them are high, she has Hashi's, however, the NHS usually only tests for TPO, which is very remiss of them!

    Also, you cannot rule out Hashi's on one negative test, because antibodies fluctuate. They should both be tested about three times. Even then, there are some Hashi's people that never have high antibodies. They are diagnosed by scanning the thyroid. Has she had a scan?

  • She had been on 10mcg of T3 only for 2 weeks and then on 20mcg of T3 for 2 weeks but had awful headaches, fatigue & swollen, so cut back to 10mcg. Her results yesterday were: TSH .98 (.27-4.20), T4 7.6 (12.0-22.0), T3 4.6 (4.0-6.8).

    Those results don't look unusual for someone who has been on a small amount of T3 for a fairly short time. If she took more T3 her Free T4 would drop further, her Free T3 would rise, and her TSH would drop further. But all of those things are what you would expect on T3 only. I agree that her TSH is quite low, but then if she has secondary hypothyroidism TSH needs to be ignored.

    If your daughter is not tolerating the T3 she is on, then perhaps she is somebody who needs NDT or has to have some Levo with her T3.

  • I had considered NDT too but I think the Endo wants her off everything until she's seen the Functional Doctor. T3 certainly didn't help her but maybe it would have if she'd been given T4 with it.

  • You can sort the constipation with 1 sachet of LAXIDO a day

  • Thanks for that. We'll try it.

  • Mottled rash on abdomen.. I had it all over my mid section and back from using hot water bottles and heat to relieve discomfort.. It is 2 years since I stopped and it's still visible although faded so it has long lasting damage.

    Constipation I am the king of.. I was getting through a bottle of milk of mag and a box of suppositories every couple of days at my worst point and passing a little handful of black pebbles each time I used a suppository. It took a long time for me to get that in order to have a functioning bowel you need fibre and you need to eat regularly.. Not supplements or OTC preps.. Actual plant and fruit based fibre as it contains all sorts of important nutrients and enzymes required for the proper digestion of food.

    Being on a carb free diet leaves you deficient in fibre so the result is constipation and bloating along with headaches and high cholesterol levels.

    My white blood cells were extremely low too because I took lots of antibiotics which destroy your immune system and ruin your good intestinal flora which leads to all sorts of issues with digestion. Nobody told me you need to take probiotics during courses to prevent that from happening..

    After 6 months of eating homemade soup with lots of greens in and with a bone broth base I am completely healed. It's easy to make, just simmer a chicken in a pot of water for most of the day and take it out and fill the broth with leeks, celery, spinach, carrots, onions, potatoes, lentils etc.. So that the veg is semi dense in it and simmer it for 30 - 45 mins till your happy with the firmness of the veg and eat 2-3 times a day with gluten free bread. You can put some of the chicken in it if you like, I do.

    They had me taking a shopping bag full of meds for years, Persistent swollen glands, CFS, Gilbert's, Crohn's, IBS, Low Testosterone, Arthritis, Osteoporosis, Ectopic beats, even MS was on the table..

    Today, Blood work is all normal, I am regular going twice a day without any meds at all or OTC things and i've got my life back. I have none of that stuff, it was all symptoms of a compromised immune system caused by a damaged leaky compromised gut.

    Keep seeing the doctor by all means but do your own research and get your daughters health in as best a state as you can.. When you've got so many things going on which are caused by other things on top of other things it's impossible. Nobody is going to hand you a magic pill to fix everything. Lesson I wasted 14 years of my life waiting for.

  • Thanks mrpenguin. She does use a hot water bottle and I have often thought that the cause.

    I will mention about the carb free diet though she eats a lot of fibre.

  • The doctors were baffled at my mottled appearance at 1st until one very experienced doctor came in and looked and said ah! How often are you using a hot water bottle? Erm, multiple times a day, I usually fell asleep with it against me too :p

    I added more to my initial response above. It's so hard trying to get to the bottom of things that I find anything people say is useful because it can trigger something which hasn't yet been thought of. I don't want it to come across as preachy or like I have all the answers because I don't. I only have my own experiences for what I've been through.

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