I posted a few days ago on visiting my psychiatrist armed with documents advised and taken with me to my appointment yesterday with thanks.
A brief outline is my brain fog and anxiety, depression had reached an all time low which disabled me to dissociation/ severe brain fog type disability, inability to function mentally. I had been on a drug trial for cortisol levels and drug resistant depression. I have had a horrific year with being simultaneously given varying doses of Sertraline, Duloxetine, Fluoxetine, before they were stopped after presenting with horrific dissociation at the final drug trial appointment. the extent was that I was a zombie after being unable to sleep for days, emotionally fragile,racing thoughts and major stomach problems etc I also had strong suicidal thoughts and sent to A& E to be seen by the mental health crisis team.I was discharged and medication removed. I want to add also that I was being seen by my psychiatrist deputy and GP who downplayed the horrific side effects and my GP on one occasion said to me "Oh I see you didn't like the "Duloxetine" and then changed it when she saw my jaw drop to " beg your pardon it didn't like you"
My relationship with my GP practice is horrific for many reasons.
I had increased myself thyroxine from 150-200mg,in a desperate last attempt to get any relief from my physical and mental state. After my Psychiatrist's response and initial evident shock I reduced it back a little to 175mg. The result of this appointment was after his initial shock he obviously saw an improvement in my brain fog and sort of agreed. he said i needed blood tests and an ECG to check my heart was OK with the increased dose.
Yesterday my tests were back and when he said they were ok i asked for copies to post here. He got uncomfortable and said he can't and that he'd gone over his remit to test for some things. I don't understand this reaction and although I know I should have challenged it I was emotionally unable to. Probably his saying "Iv'e gone over my remit"
I know the blood tests reflect none of what is required to help me and my many symptoms but the few he gave me verbally may identify something.
I stated my appointment by asking for the results which he said "were all within range" except Vit D which if i am not taking any supplements he advises I may benefit. I then asked if he would consider trialling me on T3. He answered a simple absolute NO he can't I would have to see my GP. I mentioned that he must know GP's are not allowed/refuse to prescribe T3 and again reminded him of my horrific relationship with my GP and again my inability to move GP's because of the necessity to challenge and attempt to remove or add my story to my my medical records. I also said I have some documents here please can you read them as I know for drug resistant depression psychiatrists have the power to prescribe He said he doesn't have the time for that.He also replied YES but that is not applicable to Hypothyroid patients only for patients who are standard anti depressant drug resistant.!!!!!!! he then again said because of my worsening stomach issues/ physical muscle pain on the increased dose I must see my GP who can refer me to an endocrinologist. I again expressed my despair that it is a well know fact that they refuse to acknowledge anything other than TSH and how I can't face going to be told that .
He said my TSH was within range and with heartfelt thanks to this forum and members en abled me to in a very limited way express my concern and little knowledge of reverse T3/T4 and non conversion problems may be the cause of worsening physical symptoms. ( stomach pain, stomach swelling, chronic burping, mid back pain , muscle pains and inflexibility) to name a few.
The results he gave me was
TSH 0.76 (0.35-3.5)
Vit D 46 (>50)
Vit B 12 202 (150-1000)
Red cell folate 193 (140-820)
My concern is his reaction to my request for copies of the blood tests and the fact he only wrote down 4. I recall the form said Thyroid, full blood count and vit D levels
I am so so down and so disillusioned about this whole situation.so any help will be greatly appreciated
I am so sorry that you are being treated so appallingly by the NHS. It makes me so mad when I read stories like yours.
The first two things that jump out at me is that you need VitD AND B12. Your vitD should be a little higher but your B12 needs to be over 700 for you to feel the benefit.
Sorry that I cant help you on any of the other issues but I'm sure others on here will.
Is the B12 something the GP would treat or is there a good supplement to buy ? Also Vit D any recommendations.
I picked myself up a little to try and get help to help my distress,and physical issues, but like everyone else I am sure it sure gives you major setbacks when you hit another brick wall.
I count my blessings for this forum as I have been searching for years to try find out what was wrong with me.
Try this for the B12 - its what most use on here and no the GP will not treat your low B12 as you are just "in range". Just a idea of how long it might take to get your B12 up - my B12 result was in the high 200's and I took one 1,000iu Jarrow supplement for six months and my level went up to 600. You might want to take two as your level is a lot lower than mine. You can't cause any damage if you take to much B12 as it will just pass through your body.
On the VitD - My GP and endo suggested 1,000iu a day to MAINTAIN my levels so if I were you I would take 2,000iu a day for 3 months and see how you feel, then drop down to 1,000iu a day. It would be helpful if your GP or endo would do you another VitD test in three months time to see how your levels are as taking to much can be harmful due to calcium issues and with the other health issues you have you don't want kidney stones or even worse on top of everything else do you. I'm a bit dubious on the range of your test as my test ranges state 50 - 75 as insufficient BUT ranges can differ from lab to lab so that's why I advise you to be careful with the VitD and only take 2,000iu daily for three months and then try and get another test done. Try these for VitD.
Have also linked you a really good article from Barts hosp that explain the link between VitD, Calcium, bones etc and what ranges should be and what you should be supplementing.
An awful lot of people come on this site with total despair in the hearts (you can feel it in their questions and blogs) but after they have been wrapped in kindness, smothered with good advice and comforted with a feeling of belonging and understanding they are soon on the road to recovery.
From reading many articles, I find that people are often told they have mental health issues or are incarcerated but eventually find out they have hypothyroidism.
I though psychiatrists could prescribe T3 for patients, particularly if they were hypo too, as T3 is the active hormone which our brains need to function, as well as the rest of our body.
I think that lots of specialists do not keep up with new research.
You have had horrific experiences which I wouldn't wish on my worst enemy.
Moggie is right, your B12 is so low, that in itself can cause lots of issues. If you supplement with Vit B12 it has to be methylcobalamin and Amazon do a selection.
Do lab tests show if a person needs T3 supplementation? Sometimes. If free T3 is lower in its range than free T4 is, this suggests that more T3 would be beneficial for that person. On the other hand, some people who have posted in alt.support.thyroid have had lab results that did not indicate a problem with T3, but they still had symptoms of hypothyroidism, and the addition of T3 helped them.
Lab results do not tell the whole story. However, most people with hypothyroidism in alt.support.thyroid feel best when their free T4 and free T3 levels are in the upper part of their ranges. The exception is with people who are on desiccated thyroid. Because it contains a higher ratio of T3 to T4 than our thyroids produce, people taking it have a free T4 level that's lower in its range when the free T3 level is where it should be, in the upper part of its range.
I did print off that very same document that you kindly supplied the link to again.I asked him in a pleading way to look at the documents I had in my hand when he said he can't prescribe me T3. Looking again at the document it does say ALL patients with drug resistant depression. I despair!!!! I am not emotionally strong enough to challenge him or my GP for many reasons which would need a more detailed explanation which unfortunately I'm sure many would not believe. I wonder myself sometimes how the health service can do what they do to people. I have had more than my fair share over the last 3 years.sadly I do now believe most have been thyroid related.
Thanks so much again. I'm going to look into the supplements x
I am so disillusioned for you. In all probability if they would get your thyroid numbers in order, all the rest would follow, i.e., cholesterol, vitamin d, B12, even depression. Why they are so resistant is beyond belief! What steps could you take to find better treatment, other than thyroxine? I believe they have a list of endos who may be willing to prescribe natural thyroid. Could you go private?
Hi thanks for the replies you have no idea how it helps me and I'm sure others.
I am not sure of the cost of going private. I am not not working although that is another issue I'm dealing with, which has undeniably worsened my coping methods.
This now poses another question of what would a guideline be of going private including the consultation and tests be ? That would be of help to me if anyone can give me a ballpark figure to see if it is something I can get the money together for. I have a Son that would do anything to try and get me feeling better
I had low B12, 167 (180-800) doc would not treat despite 28 horrendous symptoms. I raised B12 levels to above 1500 by taking methylcobalamin 5000mcg x 5 daily, sub-lingually, Jarrows or Swansons, from Amazon. Felt difference in 5 weeks, though had been rather ill. recovered completely in 4 months. Folate level should be at least 3/4 way up range, you can monitor B12 and folate in same finger prick test, £30, from:
Symptoms: utterly exhausted, spent many days in bed but unable even to read, too tired. Despite exhaustion, unable to sleep through night as when B12 deficient the muscles do not get enough oxygen, then when horizontal in bed they get even less and merry hell then breaks out: sharp pains in feet, tops, bottoms sides, big toes then the others joined in; creeping sensations under skin of legs, like a lacy network being activated; shooting pains in shins, in thighs; strong pain sensations in femurs (or muscles?) so that backs of thighs ached all their length; muscles all over twitched and leapt of their own volition having gone through a phase of weeks of sensations just like bubbles rising to the surface then "popping" when they got to the skin; peculiar unpleasant ache from kneecaps to about 4 inches up, at the front; scalp tingling non-stop, this tingling went right up my ears but ears hurt as well as tingled, scalp just tingled strongly; pins and needles sweeping up lower legs, different from the lace network activation sensation; prickling sweeping up legs, prickling was more painful than the pins and needles; palm sized burning patches just below each knee; odd, metallic taste in mouth even when I had eaten nothing; feeling nauseated, but was not vomiting; ulcers on tongue and cheeks lining; tongue enlarged, deep red and deeply fissured; dreadful pulsating headaches; cursive handwriting impossible, could not control the pen/pencil; alcohol intolerance; sores at mouth corners spreading to about 1 centimetre diameter; skin on face, shins, all flaking very noticeably. Had to get up during the night when could not sleep and stamp about house to relieve the pains, some were approaching agony level when cramp struck.
The sensations in bed gradually spread throughout the day and life was torment.
Doctor would not treat me or even recognise I was low in B12, just poured anger and contempt on me, shouted at me, was told I had "health anxiety" (!!!) and if I "went looking for symptoms I would find them" so was very frightened (not by him, by symptoms) but bought loads of Swanson's methylcobalamin ( must be methylcobalamin, do not touch cyanocobalamin, and do get the 5000mcg tablets, repair, thyroid boosting, is all the quicker) from Amazon and took at least 25,000-30,000 mcg each day, spread throughout day, checked folate levels privately (Myrios)always very high, ate potassium rich foods (bananas, blackstrap molasses, figs, dates, etc.,) as potassium can be depleted when the new red blood cells are made in the presence of much-needed B12. loads of green leafy veg too for magnesium, etc.
All the above are things of the past, take Swansons sublingual B12, just 3 x 5000mcg tablets on one day weekly, for maintenance. Always have Solgar's Betaine Hydrochloride with Pepsin, 1 tablet daily at main protein meal to perk up stomach acid so getting max B12 from protein. Monitor by Myrios.
B12 is only found in animal protein, never in plants.
In Sweden 70% of B12 cases are dealt with by oral or sublingual supplementation. Oral is swallowing the pill, sublingual is dissolving it under the tongue, where B12 enters bloodstream via membranes under the tongue, do not crunch the tablet, let it dissolve under tongue very slowly. Sublingual method best as avoids any stomach/digestive issues.My dosage recommendations (25000-30000mcg daily) are reckoned in Holland to be the equivalent of 2 injections weekly. You can boost your B12 yourself.
Though your levels are very low probably no NHS doctor will give you injections, probably just sneer angrily as my (ex)doctor did when I asked for injections.
Thanks so much for your detailed reply and for the time taken to write everything. Your description of your muscle pain weakness is spot on as in trying to explain to my son how some of my pains felt, I described exactly like you did "it feels as though there is no oxygen getting through my body to my muscles) utter exhaustion. exhausted but sleep evades you.
I can relate to much of your experience.They just don't have a clue! what we go through.
I can fully relate to your GP experience as the last time I was there she was typing on her keyboard the whole time I was there (not my records as I didn't say much) that is one of my mild experiences!
Believe me, you will get no help from the NHS as your results are in range, even if research shows that neurological symptoms can occur at levels of 300. But you can cure yourself of all your B12 symptoms as I did, in only five weeks I was feeling considerably better and was fine at the end of four months. Last to go was a very unattractive, but luckily only occasional, writhing and flickering of facial muscles. Wore scarf over face to hide Frankenstein appearance. If you go looking for symptoms you will find them - are they mad? How could anyone imagine writhing facial muscles?
Hello, following the B12 link above to amazon B12 I find that it is to Jarrows 1000mcg tabs: please do buy Jarrows 5000mcg tabs and take about 5 x 5000mcg tabs daily. This bigger dose is harmless but gets B12 levels higher more quickly and efficiently but make sure the sublingual B12 is dissolved under tongue as slowly as possible. Subl much more efficient than taking it orally.
You will feel better in weeks and much, much better in about 3 months.
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