Medical records, surprises

[Barb1949]

Hi all,

Well I have finally read all my medical records and, apart from the one already told to you, re having thyroid disease from a baby, there are no other great shocks. Well, apart from my blood results!

I have some results going back to 1999 and a comment on another page from 1997 which I hope someone can explain:

DUNDEE RISK: Rank = 76 Score = 3.8

Still I have discovered I was put on 50mcg levo on diagnosis of Myxoedema which was raised to 100mcg 6 wks later and 125mcg 5 wks after that. At 6 months I was taking 150mcg. There are no blood results available in my records until 1999, some 8 years later. I think I must have been somewhat stable as my dose was not altered in all this time.

15/6/99 TSH 0.08 - levo cut from 150 to 50 mcg!!

1/10/99 TSH 17.86 - raised to 100 mcg , surpise!!!!

23/6/03 TSH 1.4 (comment on report, TSH less than 0.1 normal for patients on thyroxine ) - first and only time I have seen this anywhere.......

1/8/03 TSH 1.4

9/12/04 TSH 0.09 Free T4 27.8

26/4/05 TSH 1.5

14/2/06 TSH 4.21

Jan/07 TSH 57.77 Free T4 9.9 (lab comment: Inadequately replaced) You don't say!!! Levo raised to 125mcg, then 150mcg, then 175mcg.

21/2/07 TSH 6.09 Free T4 17.1 Levo raised to200mcg

26/4/07 TSH 3.51

23/5/07 TSH 3.31

9/2/09 TSH 0.50

18/2/10 TSH 1.93

28/2/11 TSH 1.65

8/3/12 TSH 1.79

7/12/12 TSH 0.08 Free T4 19.9 Free T3 4.4

25/2/13 TSH 0.09 Free T4 19.8 Free T3 4.0

13/5/14 TSH 32.18 Free T4 13.1

3/11/14 TSH 0.03 Free T4 21.6 Free T3 4.2

Gp wanted me to cut levo to 175 mcg but I began to feel really unwell again so went back to 200 mcg. Gp was not impressed!

No idea what happened in May last year but gp had rung the lab and they said this was correct and not a typo. I suppose this does explain why I was falling asleep all the time, again. Cannot remember if brain fog was worse as my memory is s**t anyway.

I cannot find any results between 99 and 03 but I do know that my brain fog suddenly and inexplicably got very much worse in 2002, I do not know if this was due to my thyroid or the fact I had an extremely bad motor accident in which I banged my head hard and had (whatever it is called when you band your head - see brain fog strikes again). I also had flashbacks for nearly a year and needed therapy. I lost a promotion at work because of this.

This has been quite an interesting exercise. There are lots more blood results but I have just been concentrating on the thyroid ones for now. I am sure I will eventually get around to putting them all on spreadsheets where they will be much easier for me to compare.

I am seeing the endo next Thursday and hope he will be able to help me more than the gp.

ps My boyfriend told me tonight he is steaming angrily at the doctors who haven't sorted out my meds yet, especially the B12. He is quite sure I will get so much better and be the old me when this is done. So sweet, he never even knew the old me. How nice is that.

[Barb1949]

Thanks Londinium

I have printed this article as I cannot really understand what it all means. I will ask my gp if she can enlighten me. (Laughing at myself for that remark).

Barb

[TigerTea]

Good morning Barb

hope it is 😊. Dundee Risk is something to do with your 'chance' of getting heart problems, I suppose because of thyroid problems from birth they thought if was good idea to do a bit of Mystic Meg, worthwhile if they 'followed through'! My question is, as you were obviously born with Thyroid problems have they every investigated fully to find out why? Have you had your thyroid removed? Sorry if I haven't read through your posts properly and you've already explained, my brain cell often works like a snail with blisters!

[greygoose in reply to TigerTea]

Also, have you got anitbodies? Weird the way that TSH keeps jumping around.

[Ruthi]

Dundee risk was a system for predicting heart disease, no longer in use, I believe.. It ran from 1 (probably dead already) to 100. At 76 you probably weren't a huge concern.

[crimple]

I would also comment have you had any thyroid antibody tests?

[valwilliams309]

wow what a supportive partner.....and what a GP mmmmmm . Good luck with your endo next week. Let us know how it goes.

[Barb1949]

Tiger tea, Well it might surprise you to know that I was actually born with a hole in my heart, which they didn't find until I was 11 and failed to come round from an anaesthetic for 3 days. Have to admit I never really had any symptoms though, I was always very active, although I did get breathless more easily than friends I didn't know this was not normal so never mentioned it to anyone. I was not 'diagnosed' until Jan 1991, as far as I knew. I only found out about having thyroid disease as a baby when I got my medical records a couple of weeks ago. My gp at the time was reluctant to do the test as he said "If you had thyroid problems I would know from just looking at you"! This was the first time I had ever seen this doctor as I had recently moved to the area. The test results confirmed Myxoedema! I have not had any surgery on my thyroid.

Grey and Crimple, I did ask for antibody tests before Christmas but the gp was unwilling to do these. Perhaps the endo will be more willing, who knows. I do have other autoimmune diseases though including pemphigoid, limited to mucous membranes, and osteoarthritis.

Ruthi, I still don't understand this Dundee Risk thing, what is the difference between the rank and the score. I was diagnosed as having angina at one time but following an angiogram this was discounted, although my heart is enlarged but just on the borderline of large/normal, whatever that means. It keeps beating and I keep breathing so that's ok!!

Val, my bf is absolutely brilliant, he has been so supportive through all this. I'm sure a lot of men would have upped and run for the hills soon after meeting me. I now have a different gp who is much better and actually wants to help me and encourages me to learn as much as possible about the condition. However, she is recently qualified and she is not allowed to prescribe some meds without the agreement of senior partners. Money, money, money!!!

[Clutter]

Barb, what leaps out is the fluctuation in your TSH, due in some part to GPs meddling with dose to force TSH into range I'm sure, but I think it likely that along with your other autoimmune diseases you have autoimmune thyroid disease (Hashimoto's) which is the commonest cause of hypothyroidism.

Your boyfriend sounds lovely. Can't you supplement methylcobalamin to improve your B12 or are you waiting on a pernicious anaemia diagnosis.

[Barb1949 in reply to Clutter]

Clutter, my boyfriend is absolutely wonderful. I am so lucky to have met him. He is a lead carer in a nursing home and he works in the dementia unit. Along with his lovely personality he is also find of telling me I will one day be a resident in his unit if I don't get myself sorted! The brain fog keeps him amused for hours, lol.

Barb

[Barb1949]

Hi Clutter, I went back to my gp last week to see about the B12 but she is adamant I should wait to see the endo next Thursday. She says he will most probably test for PA, Hashi's and scan my parathyroids. Seems I have gone hyperparathyroid, lol. Apparently if I start B12 before I see him the tests won't be true. While this seems quite obvious it is also about 4 months since they found my B12 was so low and I am getting worse. I also have numerous neuro symptoms, a couple of which I have had for a long time but didn't know about B12.

I joined a hyperparathyroid forum last week and posted my blood results on there too. They keep insisting my TSH and freeT4 results are the wrong way round!! What can I say. They are telling me my diet is all wrong etc. And that 200 mcg levo is far too high! I thought that site would be all about parathyroids but they all seem to be more interested in thyroids instead. Think I'll research that later.

I do wonder how I was actually managing to do anything at all when my TSH was 57.7, I thought it was awful when it was well above 30.

I am so pleased I found this site or I might have let the gp cut my dose, yet again, in November. Well actually I did for a couple of weeks, then went back to 200 mcg. I don't feel well on this dose but I do feel better than on a lower dose.

I agree with you that I probably have Hashi's but the gp said the endo would test for that. The original reason I wanted to go to the endo, and in all these years I have never seen one, was to see if I could get some t3 added to the T4, or perhaps get a trial of NDT. I think the goalposts have moved somewhat, but I still want to get an answer to that. Who knows if I get the B12 sorted the rest of the problems might even resolve. (She says with tongue in cheek).

Barb

[Clutter in reply to Barb1949]

Barb, I think your GP is a numpty. Treating low B12 with neuro symptoms can reverse those symptoms but ignoring it can mean irreversible neuro damage. There's absolutely no reason why your GP shouldn't have tested intrinsic factor 4 months ago. If positive you should have been given loading injections and maintenance injections. If negative, depending on how low your B12 is you should still have been given injections to raise levels and then once high should have been told to supplement. It doesn't need an endo to test B12, IF or thyroid antibodies.

Anyone who tells someone their medication is too high when shown high TSH and low FT4 is also a numpty.

Good luck with the endo and getting T3 prescribed. That will be easier than getting NDT on the NHS.

[Barb1949]

Clutter,

my B12 was 237 on a scale of 200 = 970. Gp said that was ok!!!!! and wouldn't prescribe. I am now seeing a different gp and it is she who wants me to see the endo first. She has written him a letter asking him to consider all the different things she has concerns about. As I said, she is newly qualified and obviously doesn't want to rock any boats, but she is sympathetic and prepared to listen and involve me.

I suspect some of the neuro damage is already irreversible, like numbness in parts of my legs, foot drop, loss of reflexes in my feet and ankles. But I have learned to live with these and they do not cause me any great problems. Some of the other symptoms are much more troubling and impact far more on my life. Still, I will do as I usually do and keep smiling. I have had depression to often and have no wish to go back to that dark place.

Barb

[Spareribs in reply to Barb1949]

I was just going to ask your levels of B12 - I was doing my homework looking at your previous posts - That is NOT Ok - it is low = I suggest you pop over to the PA forum and ask about IF tests etc.

Meanwhile parathyroids screams calcium control - low Vit D to me - whilst we're at it hows your iron levels? J

Dundee risk on pubmed (only men tested?) forerunner of the cholesterol malarkey?

ncbi.nlm.nih.gov/pubmed/193...

[Barb1949 in reply to Spareribs]

Sparerib,

I am presently taking 4000iu Vit D for 50 days when I will get tested again, I am not expecting this amount to have raised my VitD to an acceptable level but will see. GP says I will probably be taking this for life. I finally got a script for ferrous fumarate last week 420 mg per day. I think this might be a little low but she didn't want to give me 630 until she sees how I respond to the 420. I am also supplementing 1000mg Vitc, one a day vitb complex and one a day magnesium. I read I should be supplementing VitK so will be getting some of this when I go shopping this week.

My iron was 6 and ferritin was also very low. My daughter was refused to give blood at the transfusion service when her iron was a good deal higher than mine.

Barb

[Spareribs in reply to Barb1949]

Good to hear you're supplementing, it is a bit of a game 'tho - keeping things away from Thyroid meds (4 hours iron).

It took me 3 months of 4000iu drops daily to increase by 10 (40 to 50) and it was spring/summertime - I have a D3 spray now - easier (and B12 & multivit spray too). Must have been a shock to find out they missed treating your thryoid.

Best wishes Jane

[Barb1949 in reply to Spareribs]

Yes, Jane,

There were one or two shocks in my records, but that was the biggy.

It's getting quite interesting finding the times to fit in all the different meds but fancy phones are wonderful things!