I'm trying to sort things out gradually. So I've been taking thyroxine at bedtime, I take my antidepressants at evening time too ( sometimes forget and end up taking them with thyroxine ) I know I shouldn't ! I want to start magnesium , have started folic acid today and selenium , so my question is... if I go back to taking Levo AM what are the eating drinking rules?? Magnesium( has to be 4 hours from Levo)? is bedtime with ADs which works out well! Selenium and folic at lunch time. I'm on the pill as well so should I take this far apart from Levo too?
Thanks in advance
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Ndobins
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If you go back to early morning levo, you take it when you wake up with one full glass of water and wait about an hour before eating as food interferes with the uptake.
Re your anti-depressant, I would have a Free T3 blood test if you can. Ask GP first but some labs don't if TSH is in range. The reason I'm stating this is that if our FT3 is low it means our body cannot work efficiently if it is not at an optimum level. i.e. the brain contains the most receptor cells as well as the billions of cells in our body.
Funny u should mention it, I've had UAT for 3.5 years and wasn't depressed until just before diagnosed, dr did full blood count and I was very high 145 tsh. Felt better after 2 months, but then when daughter was a year old went down hill, all thyroid levels fine. Battled to the point of being on my knees so went on the ADs. Still tired still depressed so saw endocrinologist , put me on t3 a year ago. My levels when he changed me onto t3 were fab but he reduced my Levo Fromm 100 to 50 and added t3, I went hypo again. That was addressed and I'm now on 125 Levo, then in July I took myself off t3. Felt dizzy tired foggy. Had antibodies test, slightly raised at 70, dr not bothered. So did my own thyroid panel. 4 weeks ago, b12 162! And antibodies still raised. Tsh t4 t3 all v good. Dr re did tsh and b12, in 2 weeks it's dropped from 0.90 to 1.25 t4 has dropped to 11 was 17.5 in a nut shell, dr won't treat b12. And my thyroid is clearly suffering. I want to come off them but I'm so vulnerable I'm scared to...
Sorry for long post, I'm trying to sort it but it's hard doing it without drs help. We want another child too but how can I with b12 like that..
b12 is a disgrace at 162. In fact I think some doctors are not trained at all as they know so little of what makes our bodies function well. Not adequately but well.
You can supplement with B12 sublingual methylcobalamin from Amazon and they're quite reasonable. You have to work up till your B12 is around 1,000 but as an afterthought ask him to do an intrinsic test to see if you have pernicious anaemia before taking supplements.
Say that its been mentioned to you and as you are going to supplement you don't want to before you know whether or not you have P.A.
I am not sure about this sentence:-
Dr re did tsh and b12, in 2 weeks it's dropped from 0.90 to 1.25
I don't know what's dropped the TSH or B12?
Did you have your blood test at the earliest possible time, fasting and did you allow 24 hours between your last dose of levo and the test and take it afterwards. It should also be a fasting test but you can drink water.
Yes tsh had risen sorry, from 0.90 to 1.25, and my t4 had dropped from 17.5 to 11. I'm waiting for the IF test as we speak . If that's not showing PA then she's not going to treat me! So as u can see I'm in a pickle really. And at 41 can't keep wait much longer to try for another. But apart from that I feel dreadful so yes it's a disgrace . I burst into tears in the surgery when she wouldn't treat b12 as I know how serious it can be.
In range is absolutely meaningless and also the new research shows that 1,000 should be the minimum to prevent problems. You can take your own B12 and not bother with the doctor. I think our member Marz will be able to advise.
Ndobins responded to Reminder of medication timings ?is the best at B
Thank u shaws , i think I will. I'll wait for the result and go from there. I'll start the thyroid medication tomorrow . Do you think it's likely my low mood and fatigue is related to all this ?
Definitely, our body isn't functioning normally so we feel bad. Sometimes we just aren't aware what the cause is - even doctors cannot guess when we expect them to know.
The definitely do for diagnosing, also they take sufficient notice of the clinical symptoms which might be quite disabling if ever the TSH reaches the point.
Even if your results for PA are negative - you can still have PA. Please go to the Pernicous Anaemia Society website and check your symptoms agsinst their list to show your GP.
Also the PAS forum here on HU will be helpful. Read their Pinned Posts for information.
I'm just waiting for the IF result now and I'm right on the point of self injecting. They seem to think 162 isn't low and are ignoring my neuro symptoms. " in range"
You guys on here are awesome I wouldn't be as clued up,also it was u who suggested I get a full thyroid panel done on Blue horizon. If I hadn't I wouldn't of known about the b12. You predicted I'd be lacking in some of them, so i thank u for that as I may have just found after 3 years what has been under lying still giving me what I thought was hypo symptoms when it's actually b12 too šš¤ xx
Thank you - always good to have feed back - and I am so pleased for you that you are beginning to solve the puzzle. However many suggestions people here make - at the end of the day it is YOU doing the hard bit Keep up the good work ....
In the above link there is information about how to approach your GP with a letter. Lots of helpful links too. Also I would be looking at the other tests required for B12 Deficiency. Even if your Doc ignores this information I would ask for it to be put on your file. Also keep a copy for your own records. A negative result for the IF does not always mean you do not have PA.
I've had a full blood count done. I eat well so I'm not sure what else it could be. It's dropped from 512 to 162 in less than a year. I haven't changed anything but my thyroid antibodies are raised too, I hope it is positive for the IF TBH! Thanks for the link , I'd written a letter for the lady dr last week but I was so upset in there that I forgot to give it to her. I just about managed to persuade her to send me for that test
They really do have a duty of care to find out the cause of such a low reading of your B12.
Have you printed off the Guidelines and highlighted the bits that are relevant to you ? This is often suggested on the PAS forum.
Yes you have had the FBC done but the tests mentioned in the above link are not included in the FBC. Homocysteine and MMA are the ones needed. Also Docs are of the mistaken belief that you have to have Macrocytic Anaemia present for B12 Deficiency. I would have a good read of the link when you have time so you are well prepared for the next stage of the battle.
Ok will do. Once the IF results are in I'll book the appointment , I've printed them off, I come in the section between 145-200? I should be being treated now while I wait, that's right isn't it.
god I wish, life's rubbish, can't play with my daughterI'm so tired and I get dizzy all the time. Headaches and forgetful isn't in it! I'll end up doing it myself x
It seems an uphill climb at the moment - BUT it will get better once you start on the correct treatment. When do you next see the GP ?
I was once a young Mum of two girls - and I would fall asleep on the floor whilst playing with them and again whilst reading their bed-time stories. I am now 70 and a great deal has happened in those intervening almost 50 years health wise So I do empathise ..... At least you know a great deal and are on the case - for me it was not until I retired did I start putting the pieces together - finally .......
So hey we are celebrating all the good things
Have been having B12 injections weekly for the last 3 years or more - given by my yoga pals who are ex-nurses or from friendly local Pharmacists. Two days ago I did my first injection myself. WOW - felt amazing
As the Guidelines mention - further testing whilst supplementing is of no consequence as results will be skewed. B12 is needed in the cells - not in the blood. Hence symptoms MUST be taken into consideration. Do get Hubby to read Pinned Posts on the PAS Forum.
My injections are Hydroxocobalamin and the Lozenges I also top up with are Methyl. Different types relieve different symptoms. Just like the thyroid there are so many permutations. We have to find what suits.
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