I was tested low in vit d and low in ferritin and am off to GP on Tuesday for a chat and hopefully pick up a prescription for both, just

[mandys]

Wondering will it sort out my problems of fatigue, swelling in legs,hands and ankles, and weight? Looking for a magic cure to those ongoing side affects.

[shaws Administrator]

With those clinical symptoms it would appear that you may well be undermedicated. Please ask for a new thyroid gland blood test TSH, T4 and T3 (most probably wont do T3). Get a print-out with the ranges and post on a new question for members to comment.

Before the thyroid gland blood tests were brought it, swelling was a definite diagnosis of hypothyroidism.

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[mandys in reply to shaws]

Hi Shaws many thanks for response, I have had recent bloods taken but endo reduced levo from 100 to 75 due to rapid heart beat and palps. Yes I thought swelling was due to being undermedicated too.

[PinkNinja in reply to mandys]

I suspect your rapid heart beat is down to the low iron rather than the levo. You might find that once your ferritin is a bit higher you can raise your levo back up to what it was. This would then hopefully alleviate some, if not all, of your symptoms.

The low vitamin D may also be playing a part.

I hope you are some improvement soon.

Carolyn x

[mandys in reply to PinkNinja]

Thanks for your advice, really appreciate it, makes it feel like there's light at the end of the tunnel x

[Jackie]

HI Low D definitely lowers the thyroid. Make sure the GP does a test for calcium before treatment. D effects the calcium. which is an electrolyte.It normally makes the calcium higher and must not go out of range, Conversely if calcium below range ,you will need some with the D to work. NICE. Retest both in 3-4 months. Why D is started slowly.

Jackie

[mandys in reply to Jackie]

thanks for advice Jackie, I will speak about that tomorrow

[Hidden]

These comments are both very interesting to me. I had bloods done 3 weeks ago, by my Dermatologist. I see him on the 18th. He thought that everything pointed to hypothyroidism and, Shaws, I think he asked for all of those tests as well as ferritin, B12 and folate and all the usual tests.

Yesterday, I read something about enlarged heart and hypothyroidism, can't remember what or where now. My GP did a CXR about 4 years ago, which showed an enlarged heart. I have no faith in my GPs.

[mandys in reply to Hidden]

I had to reduce my levo from 100 to 75 due to heart palps and rapid heart beat and I too have lost faith in my gp, I am seeing another one at the practice tomorrow so hopefully might get a better bedside manner!

[Hidden]

Hope you get your magic cure mandys and, I apologise for hijacking your post!

[mandys in reply to Hidden]

haha thanks mrsmop! no worries about hijack lol

[Moggie]

Sorting out my vitD and especially iron has made the world of difference to me, so much in fact that I have had to reduce my thyroid meds because I kept going over medicated.

Moggie x

[mandys in reply to Moggie]

thanks moggie I have just had to reduce from 100 to 75 daily levo so not sure if I will need to reduce anymore, fingers crossed x

[mandys in reply to Moggie]

that's good news to hear you felt better, I hope too soon as well. I have already had to reduce due to heart palps, so would like to trial some t3 as still continuing with the swelling (I look like the Michelin woman!!) x

[globalzoe]

I recommend the vit D injections - it certainly sorted out my fatigue! I also cut out sugary foods and wheat from my diet. I also take whey protein daily (hormone-free and from grass-fed cows) and iron tablets. A few months later, and I'm almost completely back to normal!

[mandys in reply to globalzoe]

I have cut back on bread and pastry but not fully gone gluten free, I tried for a few months before xmas, gave up tho, didn't really feel any different, I know wheat and gluten is not good for thyroidies. I will ask tomorrow if injections are an options as its something less to worry about remembering to take!

[Wheres_my_slipper]

Hi Mandys,

Just to say that I had similar results to yours a few months back, and I was also hoping that improving the vit D and ferritin would put paid to the fatigue and achiness. I was started off on 1,000 IU of D3 daily, and three months later, my vit D had dropped even further (to 18 from 23), so I'm now on 10,000 IU twice a week - I'm hopeful this will sort things out as I'd had no change apart from being slightly less achy.

I have been responding to the iron (600mg daily of ferrous gluconate), and am now at a level of 43 (no idea of lab ranges as the GP couldn't work out how to print!!), which I think is still a bit on the low side.

My GP refused point blank to have T3 tested as was more concerned with TSH (suppressed) and T4 (in the lowest quartile...). He also ordered folate and B12 (I supplement this myself) at my request and they came back in range - though again, I'd have liked to have known the range as I know us hypos should aim towards the higher end of things.

I hope there will be a difference soon, but it's just annoying that I had to wait for the three month blood test to find out that vit D was still bad, and I have about two months to go until the next one. Ho hum!!

Best of luck to you getting it sorted soon as I know how frustrating it is waiting for things to improve.

[marmaris in reply to Wheres_my_slipper]

I also found out that I had low vit D on 800 IU twice daily for 8 weeks then retest. I take Levo 100mcg and 20mcg T3 from Endo (NHS), I was taking mexican cynomel and felt it was stronger, but at least after 19 years of T4 only the Endo gave me T3. For those of you out there who are still wanting this I trialled it myself with great care and told the Endo I felt Ok with it. I think that this was half the battle. I still have not lost the weight and I am tired and get depressed, and also recently found out my aches and pains are due to Cervical Spondylosis. The doctor has given me Amitriptyline to try on a very low dosage of 10mg to be taken 1 at night. I am however very reluctant to try these as they are classed as an antidepressant. Had neck procedure in January Root nerve into neck but did not last and she has now referred me to the pain clinic. I also have reserves with regard to Fibromyalgia as I have read a lot about this with Dr Lowe and Dr Peatfields books. Any help and advice I would be grateful for please.

[yenool in reply to marmaris]

While Amitriptyline is an antidepressant the dose for depression is 15 to 20 times as high as the low dose they give for pain. A lot of antidepressants are used for nerve pain and they can be very effective.

Amitriptyline is often used 'off-label' for back pain, nerve pain, fibromyalgia, chronic fatigue, etc. If you have a lot of nerve pain it can help block that and also it tends to make you quite sleep so taken in the evening it can help sleep through pain too.

I found it quite helpful for a while but it did eventually stop working for me. Side effects were daytime drowsiness if taken too late in the evening, constipation and dry mouth.

[marmaris in reply to yenool]

Thanks for that yenool, I am very hesitant as my doctor told me about the constipation and dry mouth which I would not like. Also for driving I would not like to be drowsy, I read to start at 5mcgs which is very low my doctor told me 10mcgs and has given me medication for this. Don't know what to do.

[yenool in reply to marmaris]

Could you try it at the weekend or some time when you don't have to worry about being drowsy?

Unfortunately it is one of those medications where you have to put up with side-effects for a few weeks as your body adjusts...... and the benefits (apart from better sleep) don't always appear until it has build up in your system a bit.

Perhaps your GP could recommend an alternative with less side effects. There are other options for nerve pain.

[marmaris in reply to yenool]

Hi yenool they first gave me Gabapetin think spelt wrong but that was a stronger medication and I did not take it. I think I will consider giving this a try.

[mandys in reply to Wheres_my_slipper]

I have started supplementing B12 as although in range lower end. My vit d was out of range and ferritin was low but in range. I am cross as this is something my gp should have tested me before I moaned and moaned to see an endo. It takes an endo to do what seems like the normal bloods to me to do for hypos, all I know is endo has recommended me back to gp to be supplied with 800 then to be retested. I just wanted to know if this would have got rid of my swelling or whether it is my rubbish levo not working on me! I am going to give these vits a go and if this doesn't sort out my symptoms ask to be put on a combo of t3 as getting fed up with this excess weight and swelling, I feel like I am growing daily very frustrating this illness, best of luck for you too x

[marmaris in reply to mandys]

I have this, swelling and especially around the middle even though now taking T3. I have taken lorry loads of vits and they say my vit b12 iron etc all ok. Wish I could find a solution. Just hoping the Vit D will help.

[Wayne1967]

Hi Mandys, so sorry your having problems. I had the same thing. The doctors said had low D3 and put me on 20,000 iU for 3 months then got to take 1000 iU a day. Going for 3 month blood check tomorrow. I also have fybromyalgia and have damaged discs in my back and neck having a spinal fusion to my back also. I take Amitryptiline 50mg and are fine with them. But I'm still unable to lose weight, feel tired all the time with no energy and bad joint pain in hands and knees also. I can't suggest anything but we sound similar so if anyone has any suggestions would love to hear. Good luck to you and I have something helps us both in the future.

[mandys in reply to Wayne1967]

Thanks Wayne, I managed to pick up my iron tablets from GP but vit d not available at my chemist as GP said some had coatings that couldn't be taken with people with peanut allergies do have yo wait a couple of days for those to come in. I am hoping lack of vitamins is now my magic cute as really struggling with any energy at the moment.

Sorry to hear about your back issues, hope the fusion works and doesn't keep you bedridden for too long.

[Wayne1967 in reply to mandys]

Hi thank you. Hope all goes well for you. My back op didn't work got to have further surgery to back and knees. Keep positive hopefully things turn for the good.

[mandys in reply to Wayne1967]

Ouch, you sound like you are in the wars - I shouldn't complain there's always worse off people than yourself. I see you a gunners fan are you not watching?!

[helvella Administrator Thyroid UK in reply to mandys]

It isn't so much the coating as the content that is largely peanut oil:

Fultium-D3® (Internis) Prescription only medicine

Capsules, colecalciferol 20 micrograms (800 units), net price 30-cap pack = £3.60, 90-cap pack = £10.80. Label: 25

Excipients include arachis (peanut) oil

From the British National Formulary.

Rod

[mandys in reply to helvella]

Thanks rod it's amazing what goes into stuff these days, thanks for that

[helvella Administrator Thyroid UK in reply to mandys]

If it were not for the peanut allergy issues, it would very likely be a perfectly reasonable substance to use! But because of that it gobsmacked me that this was one of the first D3 supplements to be readily prescribable. (Even then, it is hard to think of people for who an 800 IU dose would a) justify a prescription; AND b) find that dose adequate!

For around £10 you can buy a year's supply of 5000 IU capsules. So six times the potency and twelve times the number for around three times the price. Why does the NHS have to pay so much when they should be able to negotiate healthy (ha!) bulk discounts.

Rod

[Wheres_my_slipper in reply to mandys]

Hi Mandys

Just come back to the thread as I saw what you said about your peanut allergy. My doctor puts down a named brand on my prescription - Pro D3 - and I note that it specifies on the packet that it is peanut free. Could you ask your GP to specify this brand on your prescription? I get my prescriptions made up at the footwear-related pharmacy (um, don't know if we can say shop names) and it's not a problem there at all, although they only stock a small amount so I generally get part of the prescription filled, then have to go back a few days later when the rest is in. Hope this helps.

WMS

[mandys in reply to Wheres_my_slipper]

Thank you, yes am waiting for my chemist to ring me when my d3 is in, will let you know what it's called, I put it in on Tuesday so hoping for it to be soon as want to start ASAP as that was out of range the ferritin was very low but in range.

[Wayne1967]

Yeh watching Arsenal Mandys. Not doing bad but won't win losing 3-1 on aggregate. But never know still time.

[mandys in reply to Wayne1967]

Shame about the loss at tonight's game, my family are saints fans!

Re the vit d - do you need to keep taking to pump up supply in your body then not take any, say through summer months? Do you get any side affects from It - Just preparing myself!

[Wayne1967]

Only been on bit D3 3 months. No side effects. Don't know if got to take them all the time. Having another blood test to see. I hope not don't need more tablets. Yeah shame we drew 1-1 but list the first leg 2-0 so hard to come back. I like saints have some iOS players and we got a few from them. Oxlain Chamberlin and Theo Walcott.