I had a ok day yesterday and realise I did too much (well a lot more than Iv'e done for months) did a little cleaning and made supper. I am paying the price physically and mentally today.I am now even more convinced that it is a conversion and maybe deficiency of vitamins/iron..
My son has told me to get info on what blood tests I need and he will use his university overdraft. Bless him
I have bought in the past a few vitamins but they sit in a bag as I have just been so down to even take them out of the bag and try make myself attempt to develop a plan.
I don't have much if any reserve and and have said to my son that I will ask advice and we can see if after the tests I can gain some strength. As mentioned before GP is a no go.
I take
150/175 mg levothyroxine alternate days. Which I still believe strongly is causing my stomach and chronic muscle joint pains
1 x Lanzoprazole per day
ibuprofen gel as required
Was on coedine phosphate and docusate but GP has extended my monthly allowance from monthly - 2 monthly and now codeine 6 monthly and docusate - 11 months time.
To be honest the way they are treating me I feel like just posting the prescription for levo .back to them as they make my pain worse and worsen my constipation. But suppose that they would probably just section me.
So any help/advice on blood tests would be appreciated .
Sure I have adrenal issues as physicaly and mentally I have no reserve and when the physical extreme fatigue hits me the mental/emotional fatigue. hits at the same time and I seem to shut down. I don't go out but if like yesterday I did a little at home I get exhausted. Any Mentally or physical distress exhausts me and my mood suffers even with tiny amounts of stress like a phone bill through the post. Iv'e posted recently in detail so I know what is causing my problems but need help please to try and improve even a little as I have a lot of distress to come. I occasionaly get upper mid back internal .
I have stomach problems worsened I think from previous ibuprofen use.which I stopped after bringing up mouthfulls of bile. so maybe that is one reason for possible non conversion. sometimes I get terrible upper stomach lower chest pain which takes my breath away and I cannot do anything other than breath deeper and pace the room. also I gripping/burning throat/jaw and tooth pain.at the same time. This may be I think when I am under daily distress when it happens now. It last for anywhere from 10- 20minutes sometimes.
My B12 and Red cell are a few points above minimum range (6 weeks ago0.
Vit D below range (6 weeks ago)
TSH 0.75 (that was 6 weeks ago on 175mg) but the psychiatrist said to maybe drop back to 150mg as 1 had improvement in brain fog but worsening body/muscle pain and stomach pain.
I haven't eaten properly for months and have gone days without eating.
I have promised my son I will be honest on here and get as much advice as I can
So can anyone offer me advice please on what tests to have and a link to the lab page..
Hi Jacaranda, I'm not much use for what tests you need etc but (((big hugs))) because you are having such a terrible time.
My TSH is 0.68 (0.35 - 5.5) and I take 75/100 mcg levo alternating each day so maybe 175mcg is a lot but I'm sure someone on here will help you with that.
Your son sounds a real treasure and he must be so worried about you so you need to try and eat to build up your health for his sake as well as for your own I know its really hard sometimes but I'm sure it will help you feel a bit better.
Take care of yourself and I hope you feel a lot better soon
Your story is heartbreaking and I would have to say that your GP is causing you harm if he is not doing anything about these symptoms. Is it not in the Hippocratic Oath to "first, do no harm"?
The stomach problems you describe, in my opinion, need to be investigated by a Gastroenterologist. You could have undiagnosed Coeliac disease, pancreas or gall bladder issues, stomach ulcer, pernicious anaemia etc. with the pains that you describe. If you are hypo, you are likely to have low stomach acid, not high, and the Lanzoprazole will only make this situation worse. With all this going on you will not be able to absorb vitamins and minerals through your stomach, which is why you test low for B12, folate, vit D, and I'm guessing iron as well. The Lanzoprazole will inhibit any absorption even further.
Please change your GP, and go to a new doctor with a complete list of your stomach symptoms, and ask for a referral to a Gastroenterologist. Do not accept any further offers of drugs without a full investigation of what is going on inside you. If you can't change GP's, write to the Practice Manager and demand better care, enlist the help of family and friends. The current situation seems intolerable to me, and you should not have to dig into your own, or your sons, pocket to sort it out.
Hampster x
• in reply to
thanks Hampster.
Re stomach I had a endoscopy which showed no ulcer and something else redness ??? they didn't really tell me or explain but gave me lanzoprazole. I continued to have worsening symptoms and they eventually sent me for ultra sound which only stated for gall stones which confused me as the scan lasted only a minute. I did check and the NHS said when they do this scan for my symptoms they check pancreas some artery and others liver ? kidney?. So that confused me further as to why did they not do a full check. I have seen some of my records from a year or two ago and it says known gall stones????? Iv'e never been told that and I don't know how they could know that. It is very confusing and hence my confusion of what is going on even without the brain fog. I never ever had stomach issues in fact had the constitution of an ox. Just worries me that I have learned from thyroid UK that the GUT is critical for conversion of T4 also the pains when they are severe really make me ill as I have to concentrate totally on them as they are so severe they completely take over me as in to try and cope with them when they are there. It sometimes worries me as my brother died age 48 from sudden death age 48 in 2006. He complained of feeling like something was stuck under his ribs 2 weeks before he died. the gp has on one occasion sent me for ECG.
My gp is a no go which is why I am trying to gain some improvement overall to allow me to face what I must do which is to ask for a investigation of my health care and most important get one distressing record changed or my version added. This has to be done as it would discriminate me for any new healthcare as they have changed it to cover themselves. I am disgusted at what they have changed the record to as it it reflects me as the complete opposite of who I am and the reverse of my very nature loving caring and compassionate. The lengths they have gone to which is blatant psychological distress and now denial of pain meds etc proves how they need to get me into that practice. I have thought of every option and even thought if this GP apologised and changed the record would that help me walk away and sign up for a new GP? but no it wouldn't as what the psychiatrist has done to me in his collaboration and support of my GP is to downplay my current mental health to in recovery stages of depression!!!!!!!!!!! High risk of suicide medium to long term. also given me first 2 then now 4 BPD traits including emotional manipulation!!!!!!!!! It is an ongoing complete nightmare. To be honest if it was up to me only I would prefer not to be here as I battle to see how this can be resolved. however my Son's 20 and 23 yrs only have me albeit I am a burden until I get this sorted out.
What has given me the push is 1/ my son's and 2/the whole injustice of it all. 3/ If I get through this I will be one hell of an advocate to anyone that needs support if they attempt to repeat any of my experiences.with them .
So if anyone can guide me please.
• in reply to
So basically, you've had tests that haven't been explained to you, and there is a possibility of results of those tests having been ignored, or incorrectly entered on your medical notes? This is completely unacceptable. I'm not aware of the complaints procedure for the NHS, perhaps someone else could comment.
I believe that if you have had endoscopy's and scans done at a hospital, it is best to phone the hospital in question and request a full copy of the pathology report. This is far more comprehensive than the details you might get from your GP. It's worth a try anyway, you need to know what these results were.
This aside, you want your health back first and foremost. I don't know where you are in the UK, but you could try phoning this charity for a second opinion:
Follow Hampster's advice and ask for a referral to a gastroenterologist. Definitely change your GP.
I had widespread joint and muscle pain whilst on levothyroxine, I could only shuffle about couldn't raise arms etc, get in or out of a bath. Some people are affected by fillers/binders. Also ask to be referred to an Endocrinologist and if you email louise.warvill@thyroiduk.org she has a list of NHS Endos and one may be near. If not go to a local one. Louise is back in the office on 12th August.
GP's and some Endos do not know best how to treat thyroid gland conditions.
If your B12 is low you definitely need to supplement if your GP wont give injections. The one you need is Methylcobalamin B12 and you can get them from Amazon - sublingual ones to by-pass your stomach. You cannot overdose so get the highest ones, 5000 mg excess is excreted in urine. Low B12 can cause pains/pins needles/stomach upsets. If you have a Vit D deficiency GP should have prescribed for you.
Lanzoparole is not recommended for long term use.
I am sure you will slowly get your health back. It is better to gradually increase meds and the more knowledge we have the better. None of us would ever have thought we would have to go through a support group to recover - GP's, we thought were better trained - only to find out that's not true with regard to thyroid gland clinical symptoms which are treated as separate instead of inclusive to the deficiency.
. I know how you feel regarding the shuffling and severe joint and muscle pain. Are you on T3 or NDT now? I know when in the past when I have been severely low emotionally and forgot to take my Levo I can say beyond doubt my stomach got al little better as in bloating and discomfort and my muscles and joints improved. So I'm convinced it is the levo.
Hi jacaranda. I can certainly empathise with you there! I have found too that if I don't take my Levo my stomach and muscle/joint pain improves too. Can't get my GP to see this, he just ignores any input from me. Most frustrating and annoying! Keep fighting!
I am sure they do know. in fact the psychiatrist noting that he had advised me to reduce my levo back to 150mg as I was experiencing increased muscle pain, arm/shoulder pain and worsening stomach pain probably indicates they do know it.
Think that is the methyl cobalamin B12 that I take, they come from Amazon - think it comes all the way from the US but doesn't take too long. I take the 5000mcg ones too. I shove it under my tongue and it just disolves, they taste nice too.
I was a bit 'shuffle about' too way back at the start but I can't remember if it was the levo or the carbimazole that did it, now I've pretty much got the levo right the aches have more or less gone. Liz x
thanks Liz. seems many of us are shufflers or have been. It's good to know that there is "light" to work towards. Thank You. I love this site and more so the "wonderful" members who are "saviours" xxxx
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