Trying to get to grips with Levothyroxine

[cotwj1]

Thought I would post what I have been through during the last 6 months as it might help others. I'm still not feeling great, but hanging in their, hoping Levothyroxine is the answer! Wonder if anyone else has been a similar run of events


07 November 23rd – fainted during the night in the bathroom and hit my head on the metal bath (fainting caused by pain to toe following a football injury the night before).

07 November 26th – Flu Jab

07 December – 08 February – having a combination of heart palpitations and feeling faint at the same time. These occurred at anytime of the day, whilst I was either sitting or standing.

08 January (3rd to 14th) – Fever and night and serve headaches

08 January 4th
Serum free T4 level 14 pmol/L
Serum TSH level 16 miu/L

08 January – Refereed to cardiologist for heart palpitations – negative echocardiogram and 24 ECG. Bloods showed a high TSH so referred to Endocrinologist.

08 January 27th – 08 February 9th – Return from Madrid and 6 hours later had upper and lower limb shakes and rash. Further 18 hours later, being sick, diarrhoea, fuzzy head. Three weeks to recover. Suspected poisoning from drinking hotel water / seafood (prawns and oysters).

08 January 7th – Thyroid Peroxidase Ab 69

08 January 18th
Serum free T4 level 15 pmol/L
Serum TSH level 12 miu/L

08 February 10th – New baby born (but I was just the Dad) Still major event in my life ;-)

08 February 11th -
Serum free T4 level 12 pmol/L
Serum TSH level 14 miu/L


08 February 12th – Seafood reaction to scallops – shakes, fuzzy head. Given antihistamines and prednisolone for 4 days, but had a terrible reaction to it (bed bound and feeling spaced out and told to come off them). Didn’t recover from this episode before having to start Levo-thyroxine

08 February 21st – Cortisol level checked – 319.

08 March – Endocrinologist starts me on Levo-thyroxine (35 days total)
19-27th Mar 50mg (9 days)
28-3rd Apr 75 mg (7 days)
4-5th Apr 50 mg (2 days)
6th Apr 75 mg (1 day)
7th – 19th Apr 50mg (13 days) (total 2200mg)
20th-22nd Apr 25mg (3 days)

During the time on Levo-thyroxine I felt terrible and showed signs of hypothyroidism (slow movements, trembling, breathlessness, dizziness, palpitations, sensitive to heat, poor focusing, whites of eyes yellow, lump in throat, flushed, weakness in limbs, memory impaired, concentration poor, sore stomach).

Whilst on levo-thyroxine, T4 21 and TSH 1.9


08 March 20th – Woke up with serve heart pains and shakes and taken to hospital. All tests came back clear regarding the heart. Taking Gaviscon seem to ease the pain. Still getting occasional chest pain – indigestion / stomach problems?

08 March 19th – Negative home test for Helicobacter Pylori

08 May 16th - Told to come off Levo-thyroxine by Endocrinologist. TSH was at 6.1. However tests 25 days after coming off Levo-thyroxine – still in system? Endocrinologist recommends no further treatment at this stage – next appointment 12 months.

08 May 23rd – Serve heart palpitations, feeling nauseous and faint. Checked over at A&E. TSH 9.1

08 June 1st – Saliva Cortisol Results (private):
• Awakening 4.2 (12-22) Ab
• Lunchtime 3.9 (5.0-9.0) Ab
• Tea time 2.6 (3.0 – 7.0) Ab
• Before bed 1.2 (1.0 – 3.0)
• DHEA – normal
• Secretory IgA 105.1 (118-641) Ab

Adrenal fatigue - started to take supplements to bring the levels back up again (which worked)

During this time -  stomach bloated, feeling tired, memory still poor, and light headed, heart palpitations (mild). Increased thumpiness of  heart. Feel under the weather and like there is some sort of imbalance in the body.

Cortisol levels at 419

08 June - Taking Levothyroxine
• 25mg on 27th, 25th 23rd 21st Every other day (4 days) + (zero +3days)
• 25mg everyday  28th June to 12th July (15 days)
• 50mg / 25mg every other day: 50mg 13th July – 25th July (13 days)  (925mg)
• 26th July 50 mg

During this time I have felt very tired, no real heat palpitations, sometimes a little dizzy if not eating food at regular times. Occasionally I feel a little nauseous for a short period of time. Memory is still impaired, but not as bad as before. Bloated stomach at times. When moving to 50mg everyday I feel generally unwell and I have  a racing head – strange feeling.

[Hollydare4]

Strongly suggest researching candida, crazy symptoms brought about by high sugar intake or antibiotic use..

[magpieannie]

Hi, my daughter is nine and born without a thyroid gland. Always on synthetic t4 Synthroid but had severe heart palps at age of 8. Found out that her t3 was low (conversion issue) She now takes Nature-Throid and is doing great. It has plenty of t3 in it .She no longer has the heart palps (PVC's) and many other lifelong hypo. symptoms are also resolving themself with the addition of t3. Hope this is the answer for you too! God Bless!

[mehem]

Hi,
  I've read your comments and I have just about gone through the same process as you recently.  I was hospitalized overnight and called 911 once because of attacks.  I had been on a dosage of 25 micrograms of levothyroxine for over two years-no problems.  Two weeks before the attack it was increased to 50 micrograms.  The doctors in the hospital  (my TSH is very high - no T3 test done) answer to my problem was to increase the levo to 75 micrograms which gave me the biggest attack yet.  I couldn't take it anymore so  I finally took myself off levothyroxine last week and my blood pressure has returned to normal.  I have the luxury of being able to take it extremly easy - just staying in bed, computer stuff, reading, maybe a walk. I was perfectly normal before my levo was increased.  I am going to try Nature-Throid at night in increasing small doses to see if that will work for me.  I was also given an pill to calm me down as I felt like I was producing enormous quantities of adrenaline or coristol or something that was just making everything so much worse for my heart.  All this happened in the last two weeks. I am  a relatively healthy 57 year old who worked out moderately almost every day, watched what I ate, took vitamins, etc., etc.  Nothing overboard.  I am waiting on some adrenal and coristol tests before I start back on a thyroid medicine hopefully at the beginning of next week.

[Smilerdeb]

There is light at the end of that tunnel.
Your history is exactly the same as mine.
Too little T4 med then when increased...too much.
Hypo to Hyper .
Drug sensitive.
Conversion problems etc.
But guess what?
8 months down the track, I am stable and have been for a few months and been on same dosage for 6 weeks now which is a miracle for me.
I am back at work fulltime and also studying.
Your Doc is 'tweaking' your meds....go with the flow.
It will happen and you will stabalise if you have regular labs done 2-3 weekly (not 6 weekly as lots suggest).
You may need a T3 to supplement if it doesnt stabalise within 4 weeks but that is a Doctors last resort.
I thought I needed T3 and 'waited it out' and found I didnt.

You are 99% of the way there.
Take Care

[cotwj1]

Sorry for the delay in replying. Still not been feeling great, but they now think there might be a problem with my adrenals as I've been having low cortisol levels. For the last three months the cortisol level has been at 270. However, recently is has increased to 366 and TSH at 1.6.

I have some really good days when I feel great and totally back to normal, but the majority where I feel quite rough, sick, tired, light headed. Just wish I could see the light at the end of this very long tunnel :-(

[stella5349]

If you are having a conversion issue  - a direct T3 medication could help you out.

No matter if it is Levo or Synthroid which are T4 meds only. IF conversion is an issue then your should take a T3 med.

What are the latest Free testing results?

[DrHart]

How about trying Synthyroid?  It is the real deal, levo is the generic???  Just a thought!

[stella5349]

If there is a conversion issue of T4 into T3 then Levo will not be the answer for you. You may want to add a T3 med along with that or switch entirely to Armour.

If you are getting the T4 and total TSH testing that is not helping you at all.

Specifically - you need to ask for the FREE T3 testing along with FREE T4 and TSH.

I don't read anywhere a TSH that would suggest eurthyroid. So I lean to believe you are still very hypothyroid and need to start a different med therapy.

[cotwj1]

Thank your for your comments. I had some private tests done and it did show that I wasn't converting T3 at the levels required (but marginal). I have had them test again, before starting on thyroxine again and my TSH was 19 T4 was within range but I didn't see the results of the TPO, T4 or T3 (I added a few more as you mentioned as I was fed up of not getting the full picture e.g. T3).

I started to take 50mg every other day, with 25 mg every other day. I moved up to 50 mg yesterday (to replace the 25mg) and felt very drugged, so I've moved back to the 25mg. The specialist wants me to get up to 50mg, but I think  I will stick at 25mg until I get another blood test - 6 weeks will be up in two weeks time. I currently take them before I go to bed, as when I first started to take them I felt a little sick (probably too much for my stomach to take), but I think I might start taking them in the morning again as on 25mg I just feel tired - which compared to all the other symptoms I've had isn't bad ;-)

They tested for hashimotos and to see if the pituitary was working - all ok. Will try and find out the results when I go back to update my records.

Thanks

Tom

[pinkie59]

Cotwj1, what laura has said is spot on, you really need to tell your doctor rather than Ask her/him Gp's need telling, if you dont look after yourself & keep going for regular Tests you will end up having a lot of trouble ahead, I have a auto immune problem with My thyroid but on my last blood test shows normally ,I have had problems since 1991 at That time I was over-active & was treated with Carbimazole for 2 years!! my daughter Dawn has been had real trouble with a goitre going back 3 years ago & she had to have 2 x lots of radioidine, the last dose was a big dose which made her go straight under-Active within 2 months, but now since April this year is on 125mcg of levothyroine & she Is having 6 week blood tests, as she is down on her TSH to 21.86 should be no higher than 4.5, where on her test last time is was 138.58 so she was running on no thyroxine at that time, & was put Straight on to thyroxine 100mcg & raised last month by another 25mcg & probably will be raised up again in another weeks time, as she just had another test this Wednesday gone!!
You really must get back there every 6 weeks for test until you are stable & make sure They are checking your T3, I think they are incline to skip that at times, as the T3 cost Them more to test that the TSH, but just tick the box yourself on you blood slip, as saving money on a test wont help your condition!! hope to here some good news soon
Good luck!!

[laura1967]

what is your tsh level now? You should be having it done every 6 weeks when adjusting meds. You also need the Free T4 and Free T3 run with the TSH. Did you ever get tested for hashimotos (antibody tests) ?  Treatment can depend upon if you have hashi's. Also you do not know if you are converting your T4 to T3 properly either. Need complete panel to see what is going on....plus you need to be tested 6wks to see if you need increase or decrease. Hope this helps. :)