I have not posted for quite a while as my daughter had to have a major operation last year, she has now recovered but all my concentration understandably has been on her.
Although I coped quite well with all the upset and worry of it all (apart from having a severe panic attack type reaction when first seeing her after the op.) I felt in December that it had all caught up with me.
I was due to have my ferritin tested as I had been taking iron pills so asked to have my thyroid levels checked as well. I was taking 100mcg/125mcg levo. alternate days.
19th Dec. 2014 Results were TSH 0.11 range 0.35 - 4.7 T4 13 range 7.8 - 21
Ferritin 91 range 15 - 300
I received a call from my G.P. to say as my TSH was suppressed and I could not have a suppressed TSH as my last bone scan (endo. arranged this in June last year ) shows I have thinning of the bones. I thought hang on I received a letter from the endo. saying I did not have thinning of the bones so told the G.P. this.
He replied "oh you have a slight thinning" I said again about the letter and he said well we can't have your TSH suppressed like this and said take 100mcg levo. daily now.
I said well if I feel worse I shall be into see you.
The receptionist has just rang to say I am due my yearly blood pressure check and thyroid levels checked after reducing my levo. I go on Wednesday for blood test.
I had some blood tests August 2014 as I was suffering from flutterings in my calf muscles and muscle twitching and jerking in different parts of my body.
Results
U&E's in range
Ferritin 77 range 15 - 300
Folate 20 no range given
B12 674 range 180 - 1130
Zinc 13.6 range 9.0 - 14.0
Magnesium 0.92 range 0.7 - 1.0
Vit 68 greater than 50 adequate
I supplement with Vit D 6000iu sublingual spray daily
B12 1200ug sublingual spray daily
Thorne Stress B Complex one daily
Bluebonnet Chelated Iron 27mg one daily with 500mg. Vit C
It is now about six weeks since I cut the levo down.
When I was taking the 100mcg/125mcg. I felt O.Kish apart from a niggling anxiety, mainly a health anxiety. When I first reduced the levo. I felt O.K. and the anxiety actually eased a little but this past week I have felt exhausted. I sleep for 11 hours a night and still wake up feeling as though I have been drugged. I ache all over, I feel nauseous and badly constipated, my carpel tunnels worse and I feel down in the dumps.
What I don't understand is that all the time I have taken levo. since been diagnosed four years ago, all it seems to do is supressed my TSH but does not raise my T4 and T3 much.
My T4 has never been more than 14 and T3 never more that 4.4 apart from once when the endo. took the bloods at 11.00am and T3 was 5.1 T4 was 13 and TSH 0.11
Could offer any advice please, should I push for a raise in Levo. or is it now time to try NDT or T3
Any advice would be really appreciated.
Many thanks browny
Written by
lucylocks
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The worst thing a GP can do, is advise a patient who is on levothyroxine to reduce her/his dose because of the TSH level. It causes the metabolism to be affected and that's why we get clinical symptoms or additional ones.
They need to be educated but there is no scientific evidence to say that we will get osteoporosis just because the TSH is out. It is not a thyroid hormone after all and we will get other diseases if our dose of levo/anything else is reduced because of the TSH. In all thyroid hormones are needed by everything in our body particularly heart, and our pulse/temp usually reduces when we aren't on sufficient. We do not want heart problems, do we. If we overdosed we would only do it for one day, I believe as the symptoms would be too awful. Why do they rarely check our Free T3? I think that's stupid not to do it automatically.
It's strange you saying about pulse/temp reducing when we aren't on sufficient meds. but I have just taken my B.P. and pulse with a home monitor as I felt I had quite bad palpitations and by B.P. is up and my pulse is 108. I had just prepared the vegetable for our meal so doing nothing too stenuous.
When I took both a couple of weeks ago B.P. was good and pulse 68
For some reason when I am under medicated I feel my pulse races and I get palpitations.
I had heart problems when I was undiagnosed. Then when on levothyroxine it
gave me never-ending palpitations. Sometimes as high as 140. Not a pleasant time. Sometimes we can be sensitive to fillers/binders and sometime if the pharmaceutical company changes the fillers/binders that can affect us as well.
Normally, when taking thyroid hormone replacements, our pulse and temp can be guides as to whether or not the dose/medication is suitable. Also our clinical symptoms too.
I did have extensive heart tests, ecg's etc. etc. and everything is fine.
If you feel hypo I think your GP is to blame for reducing your medication.
If you read the answer to the first question on this link.
The G.P. who told me to reduce my levo. is the oldest one at the practice, around retirement age, you would have thought he would of been of the old school like
Dr. Peatfield and Dr. Skinner was but it seems he is TSH obsessed like the rest of them.
If he will increase the levo. when I go to see him do you think it would be best buying more myself or switching to NDT as I can't say I have felt particularly well with levo. just O.Kish.
I was sorry to hear of your health problems and to hear you had suffered such stress from your daughters'
operation. We mothers just cant help but worry about our children As she had major surgery
I can fully understand what you went through and the impact it has had on you
I can relate to your situation with family illness and also medication.
My GP advised me to reduce my medication but didnt say T3 or T4 or by how much My TSH was 0.13 which I advised him was down to the T3 . I halved my T3 to 12.5mcg continued with 50 T4and he was delighted when my TSH raised slightly . I wasnt too happy as I was coping then but since the reduction my health, like yours has deteriorated considerably and the fatigue is back which makes small household chores quite stressful As a result of these debilitating changes
I've asked to be referred to another endocrinologist
I've had to wait three weeks for an appointment -just one more to go then I hope I will be receive the correct medication. the last weeks have been a nightmare
Can you get to see your endocrinologist and hopefully review your situation
After all Drs are General Practitioners and subsequently they dont know the finer details of any medical condition thats why we have consultants who should get us well
Sincere good wishes for a return to good health for both you and your daughter
Many thanks for your reply and good wishes, and sorry to hear you are suffering also.
The endo. I saw last year discharged me.
He thought I was over medicated because of my TSH. I did say to him that I thought my T4 and T3 should be higher but he said if we try to bring them up it will push my TSH down further, but he did agreed to leave me on the dose of 100mcg/125mcg. levo.
Who prescribed your T3, or are you self medicating?
I am going to see what my results are after my levels are checked next week then see the G.P. if I do not get any joy I think I going to look at self medicating.
I would see a private endo. on Louise's list but there is no one in my area.
Hope you can get your meds. sorted when you see the endo.
I cant believe the similarity. My endo said my readings were normal and there was nothing more he could do. Another said I had ME or sleep apnea I felt neither were correct hence as I was nowhere near 100% I self medicated T3 ------with caution
I'm very optimistic re this new endo. I've heard good reports and depending on where you are in the country and the outcome if my consultation I could pm you the details
My endo. also said I could have sleep apnea and said I should talk to my G.P. about been referred to a sleep clinic, I never bothered as I though he was just fobbing me off.
I am in East Yorkshire, but if you see your endo. and you are happy with her/him I would be very grateful for their details. I am quite willing to travel to see the right person.
Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft. Read question 6 and maybe discuss how low your TSH can go (it makes no sense really as it's nothing to do with the thyroid gland). In the past it was always clinical symptoms which were the priority. If your GP wont prescribe some T3 to a slightly reduced T4 I would get my own. I think it's the very least they can do as levothyroxine isn't always the 'be all and end all' for many people that the BTA says it is.
As you are already prescribed T4 I would try the addition of T3 first. I hated levo as my experience of it was awful but many feel much better when T3 is added. As you are feeling hypo I would reduce T4 by about 25mcg and would add 20mcg T3 (equals 80 mcg levo). Take your pulse/temp several times a day as a record. Adjust by how you feel.
Browny, your TSH is low but it isn't suppressed, suppressed is <0.04.
This study from 2010 says:
New research shows that it may be safe for patients taking thyroxine replacement to have low but not suppressed thyroid stimulating hormone (TSH) levels. The research shows for the first time that it may be safe for patients to take slightly higher doses of thyroxine than are currently recommended.
If your GP can't be persuaded to increase your Levothyroxine add some T3 but bear in mind that even a small amount of T3 will suppress your TSH. See what your FT3 result is before deciding how much and whether or not to reduce T4.
My TSH is suppressed and a Dexa scan shows I have mild osteopenia. I don't have options whether or not to suppress but would choose to suppress rather than feel hypo. I think your GP is possibly over cautious but it really ought to be your choice whether to feel well now with increased risk of bone thinning or not.
So a suppressed TSH is not anything below the bottom of the range. In my case anything below 0.35.
A suppressed TSH is below 0.04
I have read the link so I will print and argue the point with my G.P.
From the letter the endo. sent me I do not have thinning of the bones anyway so I will take the letter to the G.P. and argue the point about suppressed TSH.
Are GP's thinking then TSH is suppressed if below bottom of range? they must do.
I will wait for my results after bloods are taken next week and post.
It never fails to amaze me that doctors think its OK to reduce meds based on blood tests alone - don't let them do it folks, stand your ground and say NO!!
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