[joqdvm18 September 11, 2018 at 10:55 am Post count: 5]

#1060924

Sorry for the long post, trying to make it as short as possible.

Questions:
1. Has anyone else switched to PTU after having a more serious reaction to methimazole (not just hives)? I have chronic urticaria so have experienced dangerous reactions to meds. I took 1/4 tab of 5 mg methimazole, so a very
low dose.
2. Anyone else experienced Hashimotos, chronic urticaria and subclinical hypER?
3. Anyone else have severe/multiple hypER clinical signs like me with TSH’s minimally suppressed? Most doctors stating that if my TSH isn’t <0.1 I won't really have any clinical signs.
4. Anyone else experienced what might be thyroid flares where all clinical signs get worse – even to the point of feeling like passing out? (although I feel bad all of the time) – or thyroid flares which are making chronic urticaria worse? (there is a strong correlation bt hypER and worsening chronic urticaria).

Currently trying anti-thyroid drugs after seeing a 4th endocrinologist and a ton of other doctors trying to rule out other possible diseases. Had an allergic reaction to methimazole (systemic in nature, not just hives), after trying it.

***Experiencing episodes of what appear to be systemic/anaphylaxis (or perhaps they are thyroid flares or both) concurrent with low TSH’s, but several doctors telling me bc my TSH wasn’t <0.1 I wouldn't really have any hypER clinical signs. I also tried very low dose Synthroid and my hypER clinical signs became much worse.

Family History: maternal aunt and grandmother diagnosed with Grave’s. Sister diagnosed with RA and Colitis.

My Diagnoses:
1. Multiple thyroid nodules for many years.
2. Hashimoto’s: Mar 2018 TPO ab (Thyroid Peroxidase) = 112 (0-34), in May
2018
TPO ab = 191.9 (<9)
3. Chronic Urticaria of Hashimoto’s (March 2018): generalized pruritis along
with serious, systemic/anaphylactic events.
4. Possible Subclinical HypER: TSH’s all typically low normal since Nov 2017
(usually above 1 in past years when checked), and now 4 low TSH values:
Feb 2018 = .283 (.45-4.5), July 2018 = 0.354 (.4-4.1), Aug 2018 = 0.359
(.4-4.1), Sept 2018 = 0.25 (.35-5.5)

My T3/T4 are always normal.
Thyroid Stim Immunoglobulin in Mar 2018 wnl = <0.10 (0-.55)
Thyroglobulin Antibody in Mar 2018 wnl = <1.0 (0-.9) & May 2018 = < 1.8 (<4) Clinical signs (in order of appearance) since Nov 2017:
1. Chronic Heart Palpitations (cardiologist did extensive testing, heart is fine)
2. Diarrhea
3. Tremors/muscle weakness, muscle tics, paresthesia (tingling/numbness of
skin)
4. Periods where my HR is above 100 for no reason.
5. Feeling jittery, anxious, difficulty concentrating/staying still (NOT normal for
me).
6. 40 lbs weight loss, most of it unintentional.
7. Periods of extreme cold sensitivity (think teeth chattering with blanket,
pants, sweater, heating pad). My aunt had cold sensitivity instead of heat
sens when she was diagnosed with graves)
8. ‘Lump in throat’ feeling at thyroid gland area, hoarse voice/voice change.
9. Bilateral eye pain/pressure with increased light sensitivity/blurred vision (my
aunt and grandmother both had ocular Grave’s manifestations).
10. Excessive hair loss – think a handful a day.
11. Now difficulty sleeping and staying asleep.

Currently taking: zyrtec 20 mg bid, ranitidine 150 mg bid, cromolyn oral solution 4x/day, pred 20 mg once daily. These are for my Chronic urticaria as I was having repeated hives, rashes and systemic, more serious allergies. I am taking iron supplement as I am starting to become anemic as well. Eczema body wash and copious lotion used as well for skin.

I have seen a few internists, 2 neurologists, 4 endocrinologists, cardiologist, hematologist/oncologist for a bone marrow biopsy for mastocytosis (negative).
I have been tested for dozens of other ‘look-alike’ diseases – all have been negative. Have an appt in a few months to see a rheumatologist. My current internist is talking about sending me to Mayo if they can’t figure me out.

[KimberlyOnline Facilitator September 17, 2018 at 2:22 pm Post count: 4294]

#1185456

Wow, it looks like you are dealing with a very complex case with a lot of moving parts! We are fellow patients here, but hopefully, others can jump in with their specific experiences. (You might also consider joining the GDATF’s Facebook group, which is getting a lot more traffic these days than this forum).

We do hear from patients who have switched from methimazole to PTU for milder reactions – if it’s a serious reaction, there’s concern that you could have the same issue with PTU.

The hives are tricky – they can be a reaction to antithyroid meds, but they can also come with hyperthyroidism (or other autoimmune diseases).

In terms of TSH, we hear reports from patients who notice symptoms as levels are *moving* – so I’m not sure it’s correct to say that you *shouldn’t* be symptomatic unless your TSH is less than 0.1, as every patient is unique!

[joqdvm18 September 17, 2018 at 7:00 pm Post count: 5]

#1185457

Thanks for the reply. I really appreciate it.

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