TSH test/Levothyroxine/Dosage of same

[cccourt1942]

I had my TSH measured in a set of labs a couple of years ago.  I had been shown to be hypothyroid since my children (both in their 50s) were little kids.  I couldn't ever tolerate the meds.  Well, this time the dr insisted. 

I receive the medical news from Medscape every so often.  One of the top topics today was regarding over prescribing (and misprescribing) Levothyroxine.  They offer specific advice.  Do any of you take large amounts and do you have your TSH + the other thyroid tests done regularly?  I must say, this is the first time I could take the meds without annoying and unacceptable side effects.  btw:  my endocrinologist closed her practice in the last year, and I haven't bothered to get another.  No one took over her practice. 

Thx for answers,
c3

[Kathy57]

C3,

I take a 50mcg of Levothyroxin daily and have my labs checked regularly.  My medical doctor prescribed it for me - I don't have an Endocrinologist.

It has kept my thyroid levels where they should be.  I'm not aware of any side effects and I've been on it for a few years.

Kathy

[Navigator]

I was diagnosed at 27.  Have been taking Synthroid since with doses starting at 75 then to 100 , going up to 125 for awhile and then back down to 100.

When my dose was higher I had heart palpitations and digestive side effects. Didn?t feel well so we brought it back down.

My regular doctor does the blood tests at my annual checkup and adjusts the meds. I also do not have an endocrinologist. I do have a rheumatologist but that is for the SJS.

[Tharrell]

Hi C3. I had total thyroidectomy after my goiter caused me problems. Thank goodness I did since on biopsy they did find papillary thyroid cancer. I was started on 98 mcg levothyroxin. At my 8 week blood test they had to raise it to 112mcg. Now I have malabsorbtion problems and the dosages on my medications is not enough since my body does not absorb them. Currently I am on 224mcg brand name synthroid which is shockinly high for my 118lb weight. I have been on this dosage already for 7 weeks and next week I go in to have my blood tested again to check my levels. I don't have any side effects, but I also don't feel any better. I think I just have too much going on healthwise to be able to tell the difference.

[Scottietottie]

Hi 

I have thyroid labs done every 3 months but that's because I seem to swing beteen hypo and hyper. 100mcg of Levothyroxine daily leaves me 'hypo' but 125mcg send me hyper - and yet a few years ago I was on 175mcg a day.

Numbers can definitely change but if you can hit 'the sweet spot' life does feel a whole lot better.

Take care - Scottie 

(Some people do better on 'Armour thyroid' but I'm not sure its easy to get.

[sickfck]

I was just diagnosed with low thyroid a week ago and I'm wondering the same thing about it being a misdiagnosis or taking meds as a bandaid fix for an underlying problem.  I'm only 32 and in the past 5 months I've been put on 2 different medications (birth control for PCOS and now levothyroxine).  At this rate, I'll be on hundreds of meds before I die! I still don't have my Sjogren's diagnosis, but I'm seeing a rheum in January.  I worry that my low thyroid is just another manifestation of autoimmune inflammation and by taking a pill to increase thyroid rather than getting to the root cause, I'm not doing myself any good.  I'm going to start a gluten free diet after the new year, then go dairy free after that.  I am on the lowest dose of levothyroxine now because I just started, but I'm curious to see what my next lab results will be in about 6 weeks.

[MAT51]

I was diagnosed with Hypothyroidism about 15 years ago when in my late 30s. I never really felt any benefit from Levothyroxine and my doses were varied - at one point I got up to 175, then down to 150, 125 and five years ago my GP reduced it to 100mcg. This was after my RA type of Primary Sjogren's had started and I felt rubbish for years - sluggish and prone to uncharacteristic low moods.
I was diagnosed with seronegative RA in 2011 and found I was vitamin D deficient. Everything improved with the vitamin D until my Sjogren's symptoms got bad.

Then I was undiagnosed of RA by a rheumatologist in January and told I didn't have a connective tissue disease because my autoantibodies and saliva flow and Schirmers were all okay. I queried this because of high sed rate (70) and SFN but he just shrugged and told me to see an endo or an oncologist . I was on a low dose of steroids at the time still.

Then earlier this year I searched out a private endocrinologist who thought I wasn't converting T4 into T3 - my TSH was suppressed but he said to ignore this because my FT4 was too low in range for me to be hyper -  so he put me on 10mcg of Lyrothyronine/T3. But the NHS doesn't believe in T3/ Lyrothyronine at all so my GP refused to continue to prescribe it unless I saw an NHS endo. Fine by me because by this time I'd had my Levo dosage reduced to 75mcg/ 100mcg every other day and I was crawling through life.

I saw the NHS endo on same day as the new rheumatologist rediagnosed me with primary Sjogren's. My ANA had turned clear positive and I had a very positive lip biopsy result. He took me off T3 but boosted my dose of Levothyroxine to 125mcg. He said as long as my TSH went up to around 1.00 he'd be happy but it was my choice as he said that my thyroid was long since defunct but the Sjogren's was obviously very active so he didn't want to mess about.

He was very nice and friendly but felt that T3 is harmful and this is why the NHS won't prescribe it. He said it can cause Atrial Fibrillation and even psychosis. Not sure about this but my ectopic beats/ arhymthia were terrible so I agreed. I saw him again last week, 3 months on, and my TSH has risen from 0.01 to 0.11 so he's happy to leave me on 125 mcg and has signed me off so I'm back to the GP with instructions for them to check once a year and be guided by my symptoms for the most part. He says that all his colleagues in rheumatology are saying that their Sjogren's patients are all falling apart with fatigue and they are wondering if this is because these patients are undermedicated for Hypothyroidism. But he thinks it's the other way round and if their SS was properly treated then their thyroid numbers would be healthier and they would feel much better.

Sorry this wasn't what you asked but I thought it might add a different perspective at least.

[cccourt1942]

Gosh sick,
     I don't think you are asking a question...but sorry you are going thru the "wait" at this time of year.  As to numerous meds by the time you are , let's say, "MY" age, I don't know.  Until I was dxed (3 years ago) I took a Nexium and 1/2 Zyrtec a day.  I had other things I took, as needed, but not 100s.     (after sjs dx, I stopped taking the Nexium)
     As to the thyroid med, I showed hypo when I was your age but the med made me extremely jittery.  THEN...at least 4 more times in my lifespan was I told to take a med.  I tried them a couple of more times.  Same side effects.  This time I had zero side effects.
     Had my TSH checked last week and it's spot on.  So...I guess the med is working properly.  The rheumy said she has added it to my routine bloodwork so I can track it better.  The article was the impetus of my post.  As to thyroid being a manifestation of SjS, I don't know.  I have been told due to psoriasis and SjS, my hypothyroid is considered Hashimoto's and is a separate autoimmune disease. 
     Keep us posted on your dx, tests, symptoms, etc.  Have a nice holiday...and drink "sips" of water as opposed to gulps of water. That is, if dry mouth is one of your symptoms.  You didn't say.
     

[sickfck]

Thank you, cccourt.  Dry mouth is my only Sjogren's symptom---my eyes are fine right now (I had issues with infections and light sensitivity in 2009).  I had a flare of dry mouth in 2013, but it only lasted a few weeks.  This time it is worse and has been since September.  I've had two different infections on my lip, due to my lips being so dry.  They gave me an antibiotic cream and the infections cleared up, but one Urgent Care doctor told me that this is not normal, and my mouth should not be so dry that I"m getting strange infections on my lips. She said to me "Never give up getting a diagnosis".  Autoimmune disease runs in my family.  I always test negative on blood tests, but always have high CRP and ESR.  Aside from the dry mouth, other symptoms I'm having are chest pain (EKG was normal), migraines with mental confusion, and my hair is falling out very badly.  The Urgent Care doc also told me that since I have PCOS, I'm prone to "more" autoimmune diseases; she considers PCOS autoimmune.  In some ways I'm glad that I got diagnosed hypothyroid because I feel like it's more "evidence" to bring to my rheumatologist appointment in Jan., but in other ways I'm sad because I think part of me was still in denial and hoping this was something else, something temporary.

Sorry for hijacking the thread and talking about myself and unrelated problems.  ; )  I hope everyone is having a good holiday season!

[jazzlover]

I take Nature Throid and I'm very happy with it. My GP is treating me. I doubt an endo would have prescribed Nature Throid. They LOVE the synthetic meds and most people (from what I hear) never feel any better on them.

If you need an FB group on the thyroid, "Thyroid Advocates" is very good.

[Deb 27]

c3, I've been hypothyroid for about 20 years and on synthroid. Mine is Hashimoto's and it can vary. Right now I am on 125 mcg. I think they are going to drop it b/c my TSH was 0.117 and it should be more like 1.0-2.0. I feel a little jittery. But, if you are on the right dose, you should feel ok. I tried the desiccated thyroid and it made my stomach real crampy in a strange way. I get mine tested about every 2 months b/c it changes so much from low to high. I hope yours is more stable, I think most have an easier time. Good luck to you.