Hi, apologies for this very long post, I just notices other members asking for results so thought I would post the whole story and see if anyone has any advice on dealing with this and also what foods I should be eating (and avoiding). Since March I've been suffering from red hot and sore soles of the feet. I worked out that this was erythromelalgia and the web forum I found on this said that it may be caused by something else, so to ask my doctor for full blood tests and to test glucose, kidney, liver, thyroid etc.
The results came back as underactive thyroid. Results are below. I've been on 25mg levythyroxene for 3 weeks and don't feel any better. I think my thyroid must have been sluggish then in Feb and March this year, I went on an intensive exercise and dieting kick. I thik it must have just given up then and I felt ill really quickly. I feel as if I've had one long hangover for months and haven't been myself at work or socially.
First test: 17th April 2013
THS 10.27 (0.35-5.00)
Free T4 10.1 (9.0 - 21.0)
Everything else tested was within the ranges except:.
Slightly High - Chloride at 107 (95-108)
High - Liver Function Total Bilirubin at 10 (0-20)
Slightly Low - Haematocrit at 0.397 (0.370-0.470)
Low - Lymphocytes at 1.7 (1.0-4.8)
Low - Eosinophils at 0.1 (0.1 - 1.0)
Glucose was fine
(I've no idea what most of these things are, but have read up a bit on THS now).
Doctor just said thyroid results would need tested again in a few weeks. She didn't want to put me on medication until I had a second test. I read this website and asked her also to test for Total T3, Vitamin D and Calcium which they did (results below). I also however asked for Total T4, Free T3, Vitamin B12, Ferritin and Foliates. The doctor said the lab only tested for what they thought was necessary which was:
Second test: 16th May 2013
THS 7.16 (0.35-5.00)
Free T4 11.1 (9.0 - 21.0)
Total T3 1.50 (0.90 - 2.50)
Calcium 2.18 (2.2 - 2.6)
Calcium adjusted 2.28 (2.20 - 2.60)
Phosphate 1.15 (0.8-1.5)
Albumin 37 (35 - 50)
Alkaline Phosphatase 78 (30-130)
Vitamin D 25. (no range but doc said 25 is low, 50 is normal?)
MEDICATION
Doc started me on 25mg levothyroxine. I took the first tablet on 24th May 2013.
Week 1 - sleeping all the time like jet lag
Week 2 - bursting with energy, thought I was back to normal
Week 3 - crashing with a vengeance, can hardly drag my body around, my eyes just want to sleep all the time.
I already take 20mg of fluoexitine anti depressent, have been on this for nearly 2 years.
The doctor told me to take 1000 of Vitamin D as well, so I've been taking this for 3 weeks too.
I know not to take the levo with anything else, just water for a couple of hours either side so I take my levo at bedtime then my other meds in the morning.
And the feet are as bad as ever. Like sunburn on my soles, or red ants under the skin. I have cooling mats to put them on in bed and also at work. I can only wear one pair of flat wide shoes that I change cushion insoles every week. Bare feet is best. The front tops of my legs are also on fire from time to time and also the palms of my hands and tips of my fingers. It made sense thinking thyroid was involved as it feels like bad circulation and blood pooling wherever it can go rather than where it should go.
I'm craving carbs I feel. Any ideas on what I should eat? My diet is all carbs. A typical day would be:
Crunchy nut cornflakes and semi skimmed milk.
2 slices of seeded toast with lurpak.
Baked potato with tuna mayonnaise.
Piece of chicken with carrots and potato
Snacks: tea biscuits, 1 bar chocolate.
Thanks so much if you can comment.
Written by
muirfoot107
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25mcg is a low starting dose, so the dr will want to re-test bloods and then increase the levothyroxine. In the meantime, you need to pace yourself as you're not better yet! I'm afraid it takes time. The vit D is low as you've said and this also takes time to increase and then you will start to feel better. Also, I'm no expert, but your depression could have been caused by underactive thyroid which yiu may have had for some time, so in the longer term you may be able to dispense with this medication.
On the diet front, it appears that people with underactive thyroid don't absorb vits and minerals as well, so a good quality multi-vitamin /mineral would be beneficial. Also, try to eat more vegetables and water. Many people feel better without grain carbohydrates. Personally, I have replaced wheat with oats and this has helped with digestion and bloating.
No ideas on the feet issue.
Other more knowledgeable people will be able to advise you better then me, but I wanted to respond.
I'm same as Mary, I try to avoid too much wheat although I have a slice or two of Cranks delicious wholemeal bread every day. My body feels better if I keep my carbohydrate intake low. Same with sugar and fizzy drinks even the sugar free ones.
Unfortunately I just love bread and chocolate and sadly I know that Fruit and Nut chocolate really ought not to be one of my 'five a day'! I try to eat lots of fruit, salads and veg especially green leafy ones because I don't like milk, I don't eat a lot of potatoes either but I have loads of fish and chicken and I drink a lot of water - well I'm always washing down pills - we don't often have cakes or puddings even though I love them.
Every day as well as my carbimazole and thyroxine I take a big dose of Vit C, an A - Z multivitamin, CoQ10, sublingual Vit B12 and I use a Vit D spray too and I really feel my vits have made a difference to my energy.
Your doctor sounds helpful though which has to be a big bonus for you.
Hopefully someone will be able to help you with your legs and feet, does it help if you can lie with your feet / legs raised? You could always chill one of those cans of Evian water spray that you get for travelling in the fridge, put a towel under your legs / feet and spray them. Not a lasting solution but it might give some relief for a while.
Hi Lots of things spring to mind. First of all, you do often get worse until better,hence frequent bloods,TSH, T4 and Free T3, and adjustments as needed, ideally 6 weekly until stable. Sorry to say this but my Endo ( and I also haver found this to be true) says that total T3 is no use at all, you need Free T3, it is bound, almost, to be low as your tSH is high, it lowers the TSH. T4 on treatment needs to be in top third of range and FT3 near the top.Calcium fine, it is only the corrected calcium that matters, so vit D ( hormonal) good to take, but re test both after 3 months, it takes that long, check corrected calcium not gone over range, must never happen, and D normally makes it go up, slightly. at the present you have plenty of scope for that, so long as does not go above range ( the Ca) usual to need vit D for life. Have you the full LFT`s ( liver function tests ), high biirubin, may show either Gall bladder disease, connected auto and hormonal but often due to grit, getting stuck. It may also mean ,if Some other LFT`s are high, that you could have diabetes. autoimmine, hormonal, symptom to start with like thyroid only worse, especially the cold and "funny" feet. Simple test for this. You need Iron/ ferritin tested, needs to be well in range, yours probably is by these results. Also B12 + foliates ( autoimmune and hormonal) need to be high in range too.
Diet ,the Diabetes diet is best for thyroid ( and ,of course, diabetes) see Diabetes UK and the American equivalent, better. Normal potatoes a no, roots not brilliant, sweet potatoes and lots of green veg. Not too much fruit, no "fruit" type drinks, eg squash, pure fruit juice, even diluted. You are probably not eating enough, but not really the right things either.First thing to do , have a Free T3 test, you probably need more T4 ( levo) and a little T3 on a script, start on tiny amount of T3 and always split the dose, 12 hours apart. Go up after 6 weekly test, if needed.
I hope that helps,
Jackie
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Hi Jackie, I did ask for Free T3 at last test but the lab seemed to just ignore that. I'm going to write to my doc before my next bloods on 5 July to ask for Free T3 and B12 too. Thanks so much for replying. Lynda
Hi Lynda, The FT3 test is one that there is often a problem getting now NHS, Lab managers decided it is not necessary! I now pay for mine through Blue Horizon, on llne, main site, very easy, try the GP first. if you do it on line, quote TUK 10 for a discount, finger prick or venous blood, £60 -£70 for TSH, T4 and Free T3.It used to always be done, no problem, my Endo and I think it is essential, why I pay for it.
Thanks Jackie, I am constantly amazed at how helpful and supportive the members on this site are. Lynda
Wonder if 1000iu of Vitamin D3 will be enough, but at least you are getting some on board!
I personally don't think anyone should take vitamin D3 without taking vitamin K2 too, (not vitamin K) as that regulates how calcium is handled in your body, and it prevents calcium getting dumped onto your arteries etc. (worth reading up, info online with a simple search)
Clearly 25mcg of Levo is nowhere near enough, but hopefully that will be adjusted upwards in time, so it's early days for that, ever onwards and hopefully you will feel better.
Low haematocrit makes me wonder what Iron/ferritn is like, and also Vitamin B12 too?
The liver function (Bilirubin And Alk Phosphatase) might well be related to you storing loads of fat in the liver... (symptoms of Non Alcoholic fatty liver disease) producing loads of Insulin when on an ultra high carb diet as you are can cause this and much more ( as in my case), and the craving carbs will only stop when you *drastically* reduce the carbs to prevent the highs and lows it produces so your blood glucose levels will be much more stable, and therefore don't produce nearly so much insulin in the first place.
The carb craving and the ever increasing carb diet is something I could write a book about, as I thought for decades I was living a healthy diet (low calorie/low fat) and getting progressively and rapidly more ill, and fatter too despite calorie intake & my carb addiction got so bad as to be ridiculous, to the point where the "diet" went out of the window and I was eating biscuits and cakes just to be able to stay alert and not flaking out!
Standard diets, even "diabetic" diets are a very good way to get far too many carbs and suffer even more insulin resistance, and more insulin means storing more fat in your liver which I suspect you need like you need a hole in the head Eating less wheat is a good idea, as it has its own extra problems for many people, but ANY high glycaemic loading from high carb eating will make you store fat, so just cutting wheat alone will do nothing for that.
If you felt "crashy" after going on the Levo makes me wonder how good your adrenal output is too... that's what happens when you have "weak" adrenal output - did you get a blood Cortisol test at all?
"Glucose was fine" yeah, so was mine! Blood Glucose that is "fine" according to Doctors and Endos will still end up causing damage to many diabetics... some reckon 7 or even up to 8.5 fasting glucose is fine, yet your eyes, organs and peripheral circulation will probably end up disagreeing in the long term, whether diabetic or not what we want is "good" or "optimal"
Did they do HbA1c too?
So "fine" or "normal" is something to watch out in Doctor-speak and something to realise for the future - just because the other items are "in range" means absolutely NOTHING... in range means you can be 0.00001% above rock bottom or too high for something and it's screaming out a potential problem, in addition a significant amount of "normal" lab ranges will be based on samples of people that include people who are overtly ill in the first place, it's something Doctors like to tell us, that it's "normal" but it's OPTIMAL that you want, not "normal" so you need to know all the readings and not just let them fob you off with that, so you can highlight where the potential for problems lies
thanks Picton, you've given me a lot more to think about and investigate. the relationship between thyroid and adrenals seems to figure quite highly. if my doc wont do a saliva cortisol test, i'm going to do one privately.
You wont get it done by your GP, you might get Blood cortisol though, and depending on how that goes maybe more testing, although you can still be feeling lousy and be above range for cortisol, just it will add more to the picture.
Hi Muirfoot I think that you need to go back to your dr and tell him how you feel and that you would like to raise your meds if at all possible. You should have bloods done probably before the raise just to check them. because your body is now getting thyroxine it is using it all up and leaving you short again. I am not medically trained but I do think you need more levo.
My Vit D level was 22 and G.P. prescribed 1000 but I was informed on this site that that dose only keeps it at the currant level, so I bought a Vit D 3000 spray and spray 2 sprays a day and feel a lot better since using it, some people use less but a 1000 a day is not high enough
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