I felt like I diagnosed myself and had to beg for help (feel very disheartened and very up and down. It’s not helpful depression is one of symptoms when levels unbalanced!)
I started taking 25mg thyroxine in July after 3 boarderline underactive thyroid test and one test with TSH 4.65. Doctor was reluctant to start any medication and only did after I cried and said I couldn’t cope and spoke of wanting to try for another baby and worries around this!
In August TSH lowered to 1.65 and I was on cloud 9 literally thought I’d hit the jackpot felt tons better. September worst period ever weak achy , seriously depressed (impacting on daily life friendships relationships energy levels etc pains in arms and legs the worst, felt like eyes hollow and thirsty and just shit!)
Got blood test as worried and cannot keep going like this. TSH sep 4.75 so doc has increased dose to 50mg said to get blood test in 6-8weeks
I can’t cope with feeling like this constantly up and down it’s really upsetting especially as want to have a baby and nearly 40
Does anyone have any advice or do I just keep jumping through hoops and feeling like I’m getting nowhere it’s like doctors don’t want to treat me!
I asked for full bloods so could check vitamins and stuff as don’t know if I should take but just did thyroid function last two times
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Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
You need to test BOTH thyroid antibodies, folate, retest B12, vitamin D and ferritin
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you for replying really in a pickle with stuff I haven’t started taking 50mg just got blood result TSH 4.75 back today but had 25mg levothyroxine first then 25mg teva
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Bless you. We are more or less in the same boat. Did you have antibodies tested?
As for treatment, it is slow only, increasing too fast or starting on a full replacement dose based on weight could be too much. Each person experience is so different.
In view of preconception, have GP refer to preconception endocrinology. I can’t say how helpful they’ll be but it’s worth a shot.
If it helps, many people, myself included have ended up with more symptoms but some pre-existing symptoms somewhat better since starting treatment. I feel like an addict of sorts looking forward to the next increase in dose!
It’s shit isn’t it think I could cope if it wasn’t for being desperate for another baby my overies are screaming but now I’m doubting and sounds like I should not be trying even though my doc said go for it. Lost baby last year and so bloody fed up
Re: Baby - yes, this desire makes thyroid treatment complicated. However, it is sensible to but this plan on hold until you feel better.
You mentioned borderline tests, and only one TSH over range? If I have got that right, then it is unusual but not impossible to began treatment. This could encourage GP to stop treatment if symtoms are not improving and TSH is in range after a 6 month trial of Levothyroxine as per NICE Guidelines. However, you will have have a stronger case for treatment if you have raised antibodies hence I would recommend having them tested. Have a google search of thyroid antibodies tests.
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think I could cope if it wasn’t for being desperate for another baby my overies are screaming but now I’m doubting and sounds like I should not be trying even though my doc said go for it. Lost baby last year and so bloody fed up 
Under active thyroid 
Statins with an under active thyroid.
Under active thyroid 
