Levothyroxine Sensitive to Increase: Hi All, I... - Thyroid UK

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Levothyroxine Sensitive to Increase

Huddy1234 profile image
4 Replies

Hi All,

I was diagnosed with under active thyroid 3 years ago and put on levo 25 mcg - in June this year I asked my doctor to increase to 50 mcg as I was aware that my dose had been kept low and I wasn't feeling any benefit from the medication. Main symptom being fatigue/tiredness/low energy!

I was taking Mercury Pharma 25's but when I collected the 50's the brand had changed to Actavis....... I had terrible side effects from these, low mood, insomnia, hot sweats day/night, anxious, sensitive, tearful, emotional.

I went back down to 25's and most of the symptoms subsided (thank god). I then asked for Mercury Pharma brand again and tried to introduce the increase twice a week but insomnia started to creep in.

I asked to be referred to an Endo and I see him on 1st September and had the below blood tests (I had eaten that morning and also taken my levo that morning as wasn't aware I was going to have blood taken)

I was told at my appointment that I had gone through an early menopause (I'm 46) which has obviously contributed to my tiredness etc.

I am currently on a 28 day trial of Teva brand levo (I am not lactose intolerant) but my endo said that some of his patients who are sensitive to levo increases sometimes tolerate this brand....... I am doing 25/50 on alternate days and am due to go back on 3rd November. I am 10 days in on these tablets and I haven't felt any bad effects or any good at present but do feel like they keep me awake at night.

Has anyone else been sensitive to increase on levo? Feels like a catch 22 as I'm obviously not on enough levo but can't seem to tolerate increase.

Is there something else I can try? Just like to gather as much information before my next appointment.

My main symptoms are tiredness/fatigue/low energy/brain fog/memory loss/ feel cold/thinning dry hair/low mood/no get up and go.

I have not had any weight gain - if anything I have lost a little but that maybe due to personal issues I currently have.

B12 - 490 (197-771)

TSH - 2.62 (0.27 - 4.20)

Free Thyroxine - 15.3 (12.0 - 22.0)

Free T3 - 4.2 (3.1 6.8)

Thyroglobulin Antibodies - 64.5 (0 - 115)

Thyroid Peroxidase Abs - 196 (0 - 33)

Cortisol - 327 (133-537)

Follicle Stimulating Hormone - 95.8 (25.8 - 134.8 Post Meno)

Luteinising Hormone - 45.9 (7.7 - 58.5) Post Meno

Ferritin - 53 (13 - 150)

Calcium - 2.41 (2.20 - 2.60)

Vitamin D - 103

Endomysium Negative

Tissue Transglutaminase - 0.3 (0-10)

Thank you for any advice you can give me and sorry for the long post.

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Huddy1234
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4 Replies
Maddux123 profile image
Maddux123

Yes I get Terrible bring five I can’t even talk hot flashes and I’m really sore throat that I could barely even swallow it with Synthroid and Level thyroxine, I get terrible hot flashes and Really a sore throat that I could barely even swallow, My doctor says he’s never had a patient that’s gone through this I don’t know what to do

Huddy1234 profile image
Huddy1234 in reply to Maddux123

It’s horrible isn’t it.

I don’t know where to turn - will see what my Endo suggests in 2 weeks when I return.

Just want to feel like me again

Maddux123 profile image
Maddux123 in reply to Huddy1234

Yeah I can’t tolerate it I’m back on our thyroid but I just think I can tolerate the T4 I’m on 25 mg of Synthroid but I take a half which is like a 15 and even a quarter and even that little Carter sauce my throat up it’s not visual but my glands inside my throat inside that you can’t see is saying hey it’s too much to four I don’t like it so now I’m going to swell your throat up and I told him but he thinks I’m crazy went to Allergy doctor and he agrees with me that I’m not allergic to it it’s just a side effect that it’s not visual it’s that my T4 is just too much

sammantha28 profile image
sammantha28

I have a few things I would recommend without really knowing how much of all of this you already know. Your ferritin levels are the first thing I noticed, off of the top of my head, that are not optimal. Look into Dr. Amy Myer's, Isabella Wentz, and Dr. Wahls. These are our go to people for info on this disease. All of them have written books and at least 2 of them have websites with tons of free info including what ferritin levels should be. Your vitamin d might be ok or just in range. Are you taking any Supplements at all? I'm actually not taking any prescribed thyroid meds because I couldn't afford all of the tests I needed to prove I have hashi's. My mother was diagnosed with it 2 months after I saw my newest doctor, who told me that I most likely had it but without those tests could not prescribe me meds. So I started Supplementing in the things I was low in from my other tests. I take a ton of different things. However I was only taking magnesium and iron for a month...I dropped 8lbs in that time (doing nothing else to try to lose weight) when I was steadily gaining in a caloric deficit prior to starting the Supplements. I started taking many other Supplements, but noticed a drastic boost in energy when my doctor put me on something he formulated in his office. It's called mitoblast2. He told me it would help with my low mitochondria production, although upon researching it myself he has marketed it towards weightloss. I don't believe it has affected my weight at all. I whole heartedly believe that Supplementing in things I was deficient in is what affected me the most. The next thing many in my support groups have done, and my doctor recommended was going gluten, dairy, soy, and GMO free (I don't think you have to worry about GMO where you are), or AIP, or Paleo. I live in a very small town and going full AIP for 6 months is not something I have built up the will power to do. I've done the others in stages. While I don't think changing my diet helped with weightloss (I steadily lost about a lb a month after the first month to equal 16lbs I've lost in almost a year), I believe it has helped my inflammation levels dramatically. Most of my symptoms are gone including serious joint pain. I still have brain fog/memory loss, occasional low energy although not often, and less motivation than when I was healthy, but way more than what I started with when I was at my sickest point, and hair loss/dry skin. Nothing has gotten rid of my brain fog. I can say that cutting caffeine accidentally had helped with my anxiety quite a bit. I think my anxiety is directly linked to stress which affects my memory and brain fog. If I'm less stressed or anxious, my brain fog isn't as bad. I found a thread today by just searching in here. It was in the endometriosis page, and the lady that posted was looking for answers to her brain fog. From what I've seen, many with hashi's also have other disorders/diseases/syndromes, especially PCOS. I'm wondering if there's a correlation to hormones and brain fog/memory loss. I had my testosterone checked some months back, and it was high, but my doctor thought it might have been that way because I was ovulating. I checked an app I have that tracks my mensuration cycle and I was not ovulating on that day. After doing my own research, I realized that just that one test could not really tell anyone much about what's really going on with hormones. Making me lose more faith in my newest doctor.

In the US I'm apart of many FB support groups for hashimoto's disease and hypothyroidism. I've been following these groups very closely for a year now and have noticed so many common symptoms, issues with the medical industry, and inability to get diagnosed or treated properly. Our advice to those who have doctors that don't listen or dismiss us is to find a new doctor that will, even it means paying out of pocket. Many have turned to naturopaths or FMDs. Not all of these doctors are great either. Many are in the market to just make money and want huge deposits for "programs" they've put together. Most of us don't buy into those, but instead choose a doctor that will not only listen and treat from the root, but also work with us financially. I can't get insurance because I don't qualify under our current standards. My pay bracket means I fall into a category that isn't addressed in our Nationwide health care laws. Most states recognized this issue and put programs into place for people like me, but the state I live in did not. I'm not sure how everything works in the UK or if this is an option for you, but if it isn't I would try communicating to my doctor that my symptoms are not just mine and I've seen the support group stories to prove it... Maybe he should start doing some more research. I hope this info helps you. If you do find out what caused it how to fix the brain fog issue please update!

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