Help! Im confused.

[nezzykins]

Hi. I feel so confused at the moment by my blood test results and the way I am feeling. I posted my results on the forum about a week ago and decided that since my TSH was low at 0.203 (ref 0.270 -4.200) and my T3 and T4 were almost at the top of referrence ranges, I decided to lower my levo to 75/ 75/ 100 from 75/100. So a very subtle reduction. I did this as my pulse has been increasing, and feeling hot one minute and cold the next. Aching shins starting up as they do when I am going too high. Today, I am so cold that I have the heating on , with thick jumper. I feel as if my internal thermostat has fused!! I am waiting for a Vit B12 panel from B.H. due to pins and needles in feet and fingers. Weight loss 21lb since Feb. My normal B12 level is 390 ( range 191-663 ). Does anyone know if vit b12 problems cause swings in temperature control? I just cant work out what the hell is going on? By the way, i have Graves.Thanks. Lynne .

[Clutter]

Lynne, are your ferritin and vitD high in range? Deficiency or low in range can cause bone and muscle pain. B12 of 390 is certainly worth supplementing but I don't know that deficiency causes temperature swings in addition to tingling and numbness.

Your symptoms sound hyper. Have you've seen your GP about the rapid weight loss. Are you taking Levo as part of block and replace? I thought Carbimazole was used for hyperthyroidism?

[nezzykins in reply to Clutter]

Hi clutter. I had RAI 6yrs ago. Ended up with agranulocytosis from carbimazole so RAI was next option. So thats why I now take levo. Ive just had a full B12 panel done with B. H. And iron/ feritin is included in this. Ive been supplementing with vit D3 drops, for about 6 weeks now so thats worth looking in to. My weight loss came about from taking a drug called quetiapine last january, as I was diagnosed with ciclathemia ( which I am doubting ). Long story. Ive also been prescribed Lanzoprazole 30mg for the past 14 yrs since diagnosis of GERD. The Graves came later about 7 yrs ago. I stopped the Lanzoprazole after reading on the forum about the risk of P.A. from long term use. I now take Betaine with pepsin, and also selenium and magnesium with zinc, due to ? Depression. I also take estrogen 0.625 premarin for the flushes. No progesterone as I have had a hysterectomy due to early menopause and had severe reaction to the progesterone part of the HRT. I dont want to take estrogen as I have read about its effects with thyroxin on the forum but the flushes are horrendous to the point of being disabling. I take it as far apart from the levo as possible. My Gp knows about the weight loss which is now stable. My appetite is really bad and I have to really force myself to eat. Ive cut down on gluten foods and sugar lately due to bloating and gas and that has improved. I am really trying my hardest to feel well again, but never felt well since I went totally hypo after the Quetapine drama. My hyper and hypo symptoms are not classical at all and cant be relied upon apart from my pulse and acking shins! im also having some problems with bladder and a feeling of vaginal thrush but no discharge. When I pass water, I feel like a " pinching feeling" that lasts a couple of minutes then it goes away. My urine is clear as I have tested it but I have had a couple of water infections over the past 6 months. Im so confused with it all. Im waiting for the vit b12 panel blood tests to come through before replacing vitb12. Sorry this is such a long reply, but so much has happened over past 6 months and its like I am trying to put a jigsaw together. Lynne x

[Clutter]

It's so frustrating when something happens to destabilise previously managed thyroid disease. Psychosis can occur when undiagnosed or under treated. Why is it easier to prescribe anti-pyschotics like Quietapine than drill down to what's going on with the thyroid and look beyond the bloody TSH result?

Has an ultrasound be done to check whether or not your thyroid is regrowing? My sister's endo advised that this can happen when RAI is used to ablate thyroid for Graves.

Would your GP prescribe T3 instead of or in combination with T4? I was on 3 x 20mcg T3 in between TT and RAI and didn't have any of the debilitating symptoms I developed on T4. It's easier to titrate dosing too due to its short half life and that could be helpful with your fluctuating hypo/hyper symptoms.

I lost 4kg after I started Levothyroxine but gained 2.5kg when I stopped taking it for a few weeks. Fell off again when I started taking it again and I can't raise my BMI which is under 16. T4 monotherapy post ThyCa TT and RAI made me very ill until I was 90% bedridden. Adding T3 has made a huge improvement in my wellbeing and I'm recovering now, currently on 100mcg T4 and 40mcg T3.

The brain is a huge feeder of T3 and if it isn't getting enough you will get anxiety/depressive symptoms, sometimes extremely severe. Although you appear to be converting as your FT3 is top of range that is at a serum level and may not be fully utilised at a cellular level for some reason.

I'm bipolar (fully tested decades prior to thyroiditis) with long periods of remission. Developing Hashi's created havoc with my previously SSRI managed bipolar but I stopped taking 200mcg Sertraline in November, 3 months after I started taking T3. Getting sufficient T3 allowed my greedy brain to have what it needed with enough left for the rest of the body's needs and I no longer have hypo symptoms.

I think the water infections are connected with under treated hypothyroidism. I experienced some very painful episodes last year.. Look up interstitial cystitis and see if anything rings a bell. Have you had a check for candida? Could explain thrush.

Raw apple cider vinegar in fruit juice before meals is helpful for low acid in addition to Betaine. Great decision to come off PPIs.

[nezzykins in reply to Clutter]

Hi Clutter. You sound as if you have been put through the ringer too! My visit to see a psychiatrist was only due to a visit to my Gp after asking him if I could be prescribed something other than Fluoxetine as I was in a new relationship and my libido was zilch. I was not expecting a referral to a psychi! So, when they diagnosed ciclathemia, I was to say the least very very confused and thought that this was a little over the top, especially after only one consultation! The Quetiapine drama ( going hypo++++), occurred exactly 6 weeks after taking a very small starting dose of 50mg morning and night. This was in November ( by the time my GP had received the confirmation letter from the mental health dept). 6 weeks later - BANG. - Didn't know what had hit me! It was an almost overnight reaction!. No warning signs. By the time I was capable of getting out of bed and getting to surgery to explain what had happened, ( which took about 10 days), I had my TSH taken which came back 0.07.( No T3 OR T4 in this area), and by then, I realized I had gone totally hypo. My pulse was 46 : freezing cold: constipation for over 1 week: could not eat: eyes were swollen and puffy: hardly enough energy to go to the bathroom; could not stop crying and wanted to end my life!. I came off them cold turkey as they were killing me! GP THEN prescribed Trazodone! Was like a Zombie! Came of them too! so not taking any anti ds at all anymore and my mood has improved for the first time in years! By the way, I filled in the yellow form from BNF with an accompanying letter about all that had happened to me from Quetiapine. Strange how the psychiatrist wanted to see me 2-3 weeks later but haven't heard from them since!

As you mentioned my thyroid regrowing? I have wondered about this due to the instability of my blood range swings. An ultra sound sounds like a good idea as I also have heard of this happening to others too.

Using T3 as you described has also passed through my mind, but here again, this area does not prescribe it, so it would have to be bought and managed by myself.

When you mentioned cystitis and thrush type symptoms related to hypo, I can recall having these in the past when i have been too low!!! so that's jogged my memory, ( or whats left of it lol). I wonder if this also happens when I am also too high - as i feel now - and as my levels suggest. Iv'e also had these symptoms when I was first diagnosed with Graves come to think of it! So it could well be a sign of being over or under- out of balance type of marker. Will also try the Apple cider vinegar too. I also wonder whether there will be any abnormal bloods from the advanced Vit B12 panel that iv'e had done through B.H. If all's well with that side of things ( which I hope to God it is), at least that can be eliminated. I have made an appt with my GP for next Wednesday and will mention these things we have talked about. Thank you so much for your time and sharing your story with me. Hope that you are keeping well. Lynne x

[nezzykins]

Clutter. Forgot to mention in above post that after going hypo from quetiapine, I increased levo to 100, which may have lowered the TSH to 0.07 by the time I got my blood checked 2 weeks later. Lynne x

[Clutter]

Lynne,

Yup, it's been a difficult time but I'm getting better now.

My GP said the practice has been instructed by the CCG not to prescribe T3. They do, however, because my endo told them too after seeing the improvement in me after I self-medicated for 3 months. Psychiatrist's prescribe T3 too, and 60mcg T3 in addition to Sertraline has been reported as very beneficial, particularly for AD resistant depression.

deiodinase.org/2013/11/06/i...

nahypothyroidism.org/deiodi...

[nezzykins]

That's interesting! Thanks again. x